Below is the full set of Blog Entries that were posted by Swoopy from the night she got back from the hospital after my stroke. The stroke happened on September 8th, 2005, around 9pm, the first blog entry was written right after Swoopy and my wife finally got home from the hospital.
—— Begin Stroke Blog Entries ——
Sep 9 2005, 02:48 PM (Swoopy)
I know I’m an admin here and I should create a section for it, but my brain isn’t there just now. So consider this the Derek update thread.
Derek is still unconscious, but they did do another CAT scan which they weren’t sure he would be stable enough for today, and he was. They also did a bronchoscopy (there will be no spelling tests here) to check for asparated materials. They did find some and are treating to combat the likely pneumonia that comes with being on a respirator. He did have a fever, but that has subsided some.
To do the CAT scan they had to lift his sedation a bit, and when they went to reinsert his breathing tube, he struggled a little, so he’s got fight in him under all the medication. They say the bleed is mostly on the right side of his brain, and therefore the right side of his body is a little weak right now, but he is responding to stimuli in his limbs.
The CAT scan showed that there has been no increased bleeding, and that the catheter that is draining the blood from his brain is doing a good job. His neurologist decided then that it was a good opportunity go ahead and do an angiogram to help find the source of the suspected AVM or anurysm. That is going on now.
Derek’s parents arrived early this morning and we all went directly to see him, and stayed so they could speak with the neurologist. And now they are getting some much needed rest. Susan is being very brave and strong, she is very close to her inlaws and their being here is good for everyone.
Our local friends are amazing, and are helping with anything we could ask for.
Our global friends..and that’s all of you..are helping me so much with your kind emails and posts. Believe me I’ll get to answering every single one of them. You’re all an amazing bunch of people..but I knew that already.
All in all, if there can be good news, there is some. Answers, not yet, but maybe soon.
Thank you all again from everyone here who loves Derek. We’ll be in touch.
Sep 9 2005, 11:52 PM (Swoopy)
Susan is reading over my shoulder, and we’re both so incredibly moved by the many many heartfelt messages of concern, care and support that we’re getting.
This afternoon Derek did indeed have the angiogram which is so important in trying to discern the cause and location of the bleed he has (had). CAT scan as of theis morning showed that there wasn’t any significant additional bleeding that had occured since the event that caused his collapse. This, is good news.
The angiogram, we heard from the RN who was present during the proceedure, showed nothing. Which, is also good in a way. This means that the suspected AVM is now extremely unlikely at this point. The befuddlement is of course, then what?
This is what we will be discussing with his doctor in the morning.
Of note also, because his sedation was lightened somewhat for the angiogram, after the test Derek did in fact open his eyes. The nurse (a wonderful woman named Kim) asked him to hold up two fingers, and Derek did so. None of us were there for this, but just hearing that it happened over the phone, made us all very excited. Under all those drugs, he’s there..somewhere, and he knows how to count to 2. We’ll take that. We’re hoping to see it, and we’ve set ourselves a goal of some face time with a conscious Derek in a week. Like everything else so far, we hope to be proved wrong and that the time line is sped up a bit. He’s an overacheiver in most things, and so far in his ..dare I say..recovery.
We are of course, elated. We realize of course the negative result of the angio and his response to instruction don’t mean that we aren’t still in for a tough road. But it did give us a much needed boost.
I can’t believe it’s only been about 24 hours since the intial occurance, it feels like a week. We have a hospital routine established, we know where to go, where to park, who to talk to, where to get coffee and which chair in the waiting room is most comfortable. We’ve made this new and frightening environment, part of our world now and it’s not as scary as it was only a day ago.
So, what now? We don’t know yet. We’ll be finding out more tomorrow. It is likely that other kinds of scans will be done to try and discover, if not an AVM then what and why. He will not however..ever..be getting an MRI.
It appears…that when doing his angiogram..they found..that Derek has a bb in his sinus. No one knows how it got there. Not even his mom and dad. We’re actually having a chuckle about it. I’ve suggested it’s an alien implant.
Our evening visit was short, but good. Derek had been running a fever, which had gone. His color was good, his blood pressure also good and the cranial pressure in his head is also improved to a 19. My research shows that up to 13 is normal. And Derek’s head is ..well..sizable. So maybe he’s got some extra room.
Susan has been tireless and strong throughout, and having Derek’s parents here has helped strengthen us all.
So, since I haven’t really slept yet, and the rest of the family just short naps, we had a little something to eat and we’re going to get a little sleep now, looking forward to tomorrow and hopefully more improvements.
Again..thank you all for your words of support. Susan is reading them over on Derek’s computer as I type this. It’s important to keep your circle of friends and family close. And I think we all feel that we’ve got a pretty big circle here.
Sep 10 2005, 1:01 AM (Swoopy)
Apologies for poor formatting, I’m a little tired just now. Here is the
latest update on Derek’s condition concerning his brain bleed that happened
on Thursday night. He is in the neuro trauma unit at North Fulton hospital
getting excellent care.
Thank you for everything everyone has done and is doing for us, it really
does help. We’ve always known our friends are wonderful, but they’re really
outdoing themselves right now.
This afternoon Derek did indeed have the angiogram which is so important in
trying to discern the cause and location of the bleed he has (had). CAT scan
as of this morning showed that there wasn’t any significant additional
bleeding that had occurred since the event that caused his collapse. This, is
The angiogram, we heard from the RN who was present during the procedure,
showed nothing. Which, is also good in a way. This means that the suspected
AVM is now extremely unlikely at this point. The befuddlement is of course,
This is what we will be discussing with his doctor in the morning.
Of note also, because his sedation was lightened somewhat for the angiogram,
after the test Derek did in fact open his eyes. The nurse (a wonderful woman
named Kim) asked him to hold up two fingers, and Derek did so. None of us were
there for this, but just hearing that it happened over the phone, made us all
very excited. Under all those drugs, he’s there. somewhere, and he knows how
to count to 2. We’ll take that. We’re hoping to see it, and we’ve set
ourselves a goal of some face time with a conscious Derek in a week. Like
everything else so far, we hope to be proved wrong and that the time line is
sped up a bit. He’s an overachiever in most things, and so far in his. dare I
We are of course, elated. We realize of course the negative result of the
angio and his response to instruction don’t mean that we aren’t still in for a
tough road. But it did give us a much needed boost.
I can’t believe it’s only been about 24 hours since the initial occurrence, it
feels like a week. We have a hospital routine established, we know where to
go, where to park, who to talk to, where to get coffee and which chair in the
waiting room is most comfortable. We’ve made this new and frightening
environment, part of our world now and it’s not as scary as it was only a day
So, what now? We don’t know yet. We’ll be finding out more tomorrow. It is
likely that other kinds of scans will be done to try and discover, if not an
AVM then what and why. He will not however. ever. be getting an MRI.
It appears, .that when doing his angiogram. they found. that Derek has a bb in
his sinus. No one knows how it got there. Not even his mom and dad. We’re
actually having a chuckle about it. I’ve suggested it’s an alien implant.
Our evening visit was short, but good. Derek had been running a fever, which
had gone. His color was good, his blood pressure also good and the cranial
pressure in his head is also improved to a 19. My research shows that up to 13
is normal. And Derek’s head is , well, sizable. So maybe he’s got some extra
Susan has been tireless and strong throughout, and having Derek’s parents here
has helped strengthen us all.
So, since I haven’t really slept yet, and the rest of the family just short
naps, we had a little something to eat and we’re going to get a little sleep
now, looking forward to tomorrow and hopefully more improvements.
We’ll keep you posted on his condition.
Sep 10 2005, 06:08 PM (Swoopy)
Has it been a week yet? It’s amazing how time plays tricks with your head. Here we are, not yet 48 hours out, and it feels like forever.
People are the power. I’ve always said faith is part of what a church supports, but the bulk of it is community. The community outreach from so so many people, people we know here at home, people we talk to all the time, people we’ve never met. That’s the greatest power I’ve ever seen. It reaches out and is a comfort when it’s late and I’m not sure how I’m going to keep going. And then I read an email from someone, offering Susan and I anything they can, and it helps. We’re a little overwhelmed right now, to say the least, so we’re thanking people but not really even knowing what we need. Other than something that turns back time and makes people indestructible.
So..this thing about the stages of grief, there’s something in there about unrealistic euphoria I’m sure. I think we had that a bit yesterday. It was good, because we do know that even at the most basic level, Derek has comprehension. The majority of the bleed is on the right side of his brain. This means his left side is physically weak, but speech and comprehension are left brain. Fingers and toes move. And that’s all really good.
Last night, no temperature, blood pressure stable, cranial pressure 19. Not far off of normal (up to 13). Overnight, blood pressure skyrocketed. Cranial pressure increased up to 31. They have plans to put a larger catheter in his head for more drainage. The balance of cerebral spinal fluid around the brain is a very delicate balance. So getting the blood out, and allowing the fluid to regenerate and maintain normal pressure is complicated.
And they’re leaning more towards calling the “event” that caused this a stroke of sorts. However, they still don’t know why it happened. And thus they can’t predict if it will happen again. We were told, that if he were to have another hemorrhage at this point, it would probably be fatal. We all in our minds know this, of course. But it’s not what you want to hear at 7 in the morning on the phone from a doctor you don’t know. The next 48 to 72 hours will be helpful in evaluating which direction he’s headed in.
I haven’t really slept much, so I didn’t go to the early hospital visit today. However, reports from Susan and his parents are that he is still very cognitive. He’s moving in response to commands, and is aware of those around him. After the night he had, I’m thrilled. This also though warrants a little care on our parts, because it’s important that he not be over stimulated. He needs to remain calm, and so fewer visitors – though it’s been amazing how people have been visiting, is for the best right now. There is a very short evening visit, and I’m going to see him then.
An update came (just now on the phone) from a friend who was there reading to Derek, which is awesome but I think we may limit that for now, to let us know that they have put him on a new blood pressure medication, and his blood pressure has returned to safe levels and the intercranial pressure is back to 21. So. Ups and downs.
Again, it’s all brand new. 24-72 hours after ANY type of event like this is the most critical, and we’re not even there yet. I still have my hopes for the coming week.
My plan is now, is to find out what steps they are going to take in order to further diagnose – and subsequently treat the problem. They have stated because of the BB…I still say it’s how the aliens are tracking him…they can’t do an MRI. Is it more important to DO one, and take out that silly BB from his sinus? So, this will be what I discuss with the doctor when he makes rounds tomorrow.
So, that’s it for now. Possibly more later. And hopefully I’ll post up some stuff to the feed as well.
Sep 11 2005, 11:58 PM (Swoopy)
Today began early, we all went to the hospital before 7 so that we could meet the doctor when he came to do rounds. Visiting started at 8, and we went in to see a Derek that was much unchanged from the night before. Which was a good thing to see. Still stable, pressure pretty good. Derek’s mom leaned in and told him she loved him, and got a hand squeeze in return. This is the best way to start a day right now, for sure.
We were able to meet the weekend neurologist, who comes well recommended and seems very skilled and also compassionate. Though upfront about the fact that while Derek is as he continually says “holding his own” during this critical period, that sudden changes could be dire and that we were doing well but far from out of the woods. It’s important to keep perspective, and I know that’s what he was doing, but it’s something very hard for all of us to hear. We went home for a little rest.
In the afternoon the phone rang and the Dr. was advising us that Derek’s catheter that is draining the blood and fluid out of his head to prevent pressure build up, wasn’t doing the job and appeared to be a little clogged. They had flushed it several times without success, and as his pressure was up they wanted to insert a new line.
There was danger that this could disrupt the clot that was preventing a further bleed, but it had to be done. Susan of course consented and asked if we should go to the hospital. We were assured (I listen in on the extension during calls) that we should stay put, and that as soon as he was finished the doctor would call back. After the longest twenty minutes, although truly a short time for such an intricate procedure, the phone rang again and we were told that it went very well. The new line was working excellently and the pressure was decreasing as well. Sigh of relief, yet another scary, but mostly positive step.
We returned for an afternoon visit, and he looked good. His color was still good, his skin is cool and dry to the touch, still no fever. All of his functions, blood pressure, heart rate, sodium levels, glucose levels, urine output..and much much more, were good. But he’d had a hard afternoon, in energy expenditure terms, and was heavily sedated. I did get a squeeze out of both hands, which is what we live for. Susan wiped his face a little, and I confirmed that he was about to start getting some nutritional support, which is key to keeping his digestive system in working order. Pupils are both active and responsive. We left, reassured and hopeful for a good night.
We’ll be headed back early tomorrow, again to make sure we see the doctor, which means I’m headed for a few hours of sleep. Derek’s parents only just went to do the same, and Susan is resting too. She mentioned she made a post this afternoon, but I haven’t gone to see it yet. I think it really helps her to see how many people are including her in their thoughts here. So thank you again.
It’s expected he’ll have another CT scan tomorrow, which may bring more answers. More updates as we have them, hopefully good ones. Every stable day, brings us closer to our goal. Night.
Sep 12 2005, 11:45 PM (Swoopy)
Thanks to everyone with all of their kind words, I’m glad that the updates
are reaching you.
This morning we were ready to go to the hospital when we got another one of those unexpected hospital calls that stops all of our hearts. Derek needed yet another drain installed in his head, his blood pressure was way up, cranial pressure too. Dangerously so.
They had done another CT scan, which I was able to get a look at. The white solids on the scan, showing the clots, were too large and too many. Also, the first notice that I had that his brain itself was being pushed slightly off-center because of the pressure.
We went ahead to the hospital and after the procedure spoke with the doctor. The continued problem is that his brain is making the cerebral fluid it needs and filling his head, but the clots are already in residence taking up space. Thus the pressure, unless the fluid is drained off. The clots are making it hard for fluid to reach the drains properly, so their placement is critical. Derek now has left and right side drains in place.
After a bit of time his cranial pressure decreased some, but not nearly as much as anyone would like. His blood pressure too, dropped a bit, but it is the plan to allow the blood pressure to remain slightly elevated in an attempted to effuse the fluids from his head.
Complicating matters was another bronchoscopy to flush out his lungs due to the aspiration of stomach fluids when he fell unconscious initially. These fluids contained stomach acids and bile and scorched the delicate lung tissues, irritating his lungs. Derek has contracted a form of pneumonia, which was expected to a degree, and is common for patience on a ventilator. He is receiving 100% oxygen to aid in his breathing, and doing no breathing of his own.
The doctors are very concerned about his condition and are monitoring him very closely, continuing to give excellent care. But it was mentioned that his condition as of today was deteriorated slightly, and should the decline continue, Derek’s chance of survival would be very low. It’s important that we know the reality of the situation, but it’s still devastating every time we’re reminded of it.
The blessing is that he is still heavily sedated, and feeling no pain. Selfishly, we’re hurting the most right now, but it helps knowing he isn’t.
At our end of day visit, his condition was relatively unchanged from earlier in the day, which means he’s holding steady and that’s good. Not much improvement, but not much backsliding either as far as we can tell.
The next five days, we’ve been told, as the clot breaks down from the thick state it is in now, that is impeding progress, to a liquid that will allow more drainage is the most critical. If Derek can remain stable through this time we’ll be a big step closer towards recovery. Five days from now sounds like eternity, as it has only been four days now since it all began.
Thank you again to everyone who has offered meals and support, and anything we could ever need. We’re not really taking much right now in the way of food offers, as we’re going out usually one meal a day just to be out in the world and breathe some fresh air, and see that normal life is going on around us. As we move further along, and the ability to exhale becomes a possibility, we may very well call on your generosity again.
I’ll send more, as I know it. Tomorrow will start off well, if we can skip that morning phone call.
Sep 13 2005, 4:48PM (Derek’s Wife Susan)
We’re having a slightly better day than yesterday. Not that his numbers are any better. Just that he’s still with us and occasionally giving a squeeze of a hand to let us know that for sure. The doctors keep saying that he’s young and strong and that that is the biggest thing going for him.
Thanks for your strength and support of us throughout this very scary and difficult time. I’m not sure whether all of the positive energy, and faith will actually help Derek, but I do know that it’s been a great source of comfort to us…his family. We’ll need that borrowed strength for the road ahead…
I’m sure Swoopy will write you with more eloquent details tonight.
Bye from me, Thanks again.
Sep 13 2005 11:25 PM (Swoopy)
Short Update tonight. Brevity for sake of additional sleep 🙂
Remember when I said that it would be a good day if the phone didn’t ring this morning?
It was a good day. No phone call. No additional drain required. The existing drains were flushed. The doctor who treated Derek upon his arrival in emergency is back from his out of town time, and was able to evaluate Derek after the weekend and he was in the company of the other two neurologists on his case. He took some time to talk to all of us, and we are as always, reassured by his forthright and informative manner. He puts us all at ease, and we’ll take any ease we can get right now.
Derek’s drains seem to be well placed around the main clot, in the center. In flushing the drain on either side, flow would be produced to the other drain, so a good space has been created for drainage. Another piece of information we enjoyed was the possible speculation that intracranial pressure readings are not as high as they appear, as the pressure next to the clot where the drains are is higher than in the rest of his head.
The CT shows that he does have some space in his head, and that’s good. If we can continue to keep pressures at reasonable levels as the clot absorbs slowly and begins to break down, we’ll be on our way toward getting our Derek back. If we can hold steady through the week, his prognosis will be much better in the long run. Though the time it will take for the clot to reabsorb and break down is another couple of weeks or more.
His lungs are being treated, and he has medication being given via the ventilator to mend damage to his lungs and ease his breathing. He’s still on 100% oxygen.
He did get another feeding today through a tube, it’s a lovely looking concoction called Fibersource. He got a central line so he doesn’t have so many IV lines in his arms. His heart rate is a bit higher today, but his pressure is holding (still high) but where they want it to help his brain drain off the fluids. And no fever to speak of, though he gets to lay on this nifty cooling blanket that is set at forty degrees and compression stockings that pulsate to keep the circulation in his legs moving, so prevent any blood clots there.
Derek’s parents came in such a hurry they didn’t bring much in the way clothes. After the hospital we did a little necessary shopping, and we treated ourselves to new pajamas. Mine have monkeys on them, and Derek’s dad has sock monkeys on his pajama pants. It’s the little things that are giving us smiles right now.
Susan’s best friend Jennifer invited me to dinner at her house with her and her husband, and it was nice to be out of the fray for a bit and play with their cats. Then she took me to the hospital to meet up with everyone for the evening visit.
This evening Derek’s condition was relatively unchanged from the morning, and in fact his intracranial pressure was down a bit more. I spoke briefly with Derek’s primary doctor, and he said he had flushed the catheters again and had gotten some small bits of clot flushed out in the process.
Susan was speaking to her brother on the phone and summed it up pretty well. “Yesterday was a bad day, because I spent it being afraid he was about to die. Today was a good day, because he hadn’t gotten any worse.”
Susan just mentioned to me how even though it’s nearly the beginning of our fifth day, it feels much like it did on the first day..when we were amazed it had only been 24 hours. We’re comparing it to Groundhog Day, (the movie…..not the holiday). Every day begins pretty much the same, continues the same, ends the same. But we know one day it will change.
We had a toast at dinner tonight to hoping for “two good days” in a row. Here’s hoping for another phone call free morning. Thanks again for all the care and concern, and also for the offers of food and help. Trust me, we’ll be accepting them when we’re ready.
Sep 14 2005 9:30 PM (Swoopy)
Another call free morning. 🙂
And all of Derek’s numbers were pretty much the same today as yesterday. They did do another CT scan this morning because even with flushing, the catheters in his head were not really producing anything and the doctors wanted to see if there was a new area they could tap into to get more fluid out. The CT showed his drains were placed as well as they could be for now, so they would closely monitor his intracranial pressure and continue to flush.
This evening his nurse was reporting intracranial pressures in the single digits. The obvious reaction to this would be elation. His doctors weren’t available when we were there, as it appeared there was an emergency trauma they were responding to in the ER. If these numbers are accurate, and as I reported yesterday his doctor mentioned the high numbers might be reporting higher than actual due to the position of the drains next to the clot, it would be an excellent thing. I’m a skeptic. When I hear it from his doctor, I’ll be a believer. 🙂
Derek is still getting nutrition through a feeding tube, and was running a very low grade fever today that was being kept in check by the cooling blanket. Still under heavy sedation, but his pupils are still reactive and all that. So he’s in there, hanging out, until we’ve healed his brain enough that it’s safe for him to wake up.
During the CT scan his oxygen levels dropped some, and he had another bronchoscopy to clear his lungs, which was reported to be productive in clearing them out some more. He was on 60 percent oxygen this evening, down from the 100 percent he had been needing the last couple of days.
So all an all, stability. We’re thrilled. Two good days in a row, we’re going for three.
Sep 15 2005 11:50 PM (Swoopy)
just realized, as I was tying up loose ends, that I had gotten so focused on doing other stuff…that there was no update posted yet tonight.
Hopefully everyone was on the same page, in thinking that no real news, was pretty good news.
Today, another fairly unchanged day. We’re going to for three.
Pressures were up a bit this evening, but some of the beta blockers that Derek had been getting had been weaned away some as well as one of the heavy duty diuretics. Medications were being given under the doctor’s ever present eye (I love that every time we’re there, we see one of them there too – though I wonder when they sleep) to combat the small rise in pressure, and we were assured that if it continued in an upward trend, we’d get a phone call.
Several hours later, we’re still phone call free, and as we’ve gotten plenty of them in the past when necessary, we feel secure about being informed whenever we should be. That does help us sleep a little easier, just with a phone next to everyone’s head.
Drains are still not producing much in the way of drainage, but we realize it’s now a timeline that only Derek’s body can dictate. Being fairly sedated still, with mild paralytics in place, we’re not getting much in the way of response. Though his nurses report that if there is any painful stimulus, his responses are present, but weak on the left side.
It’s hard to believe that it was a week ago tonight that a small group of people were consoling each other in the emergency room, in shock over what had just happened to someone they all dearly loved, without warning. If our lives changed that night in about 20 minutes, they’ve evolved into something completely new over the course of a week.
Please, take care of yourselves. Hypertension is one of those things they call a silent killer. It’s highly possible it led to the situation we’re in now. Exercise, get regular check ups, and stay away from the cheese fries. Because we love you, and want you to stay healthy.
Also, talk with your family and loved ones about what to do in case of an emergency. And if you can, plan for the future, because you never know what it might bring. Here’s to the health of everyone close to you, and here’s to hoping you never need the plans you’ve made in case they aren’t.
Also..I honestly haven’t had a moment to read anything on the boards today. My apologies, but I have a feeling that I may have some time tomorrow, and I hope so, because I desperately want to. Thank you so much for your continued interest and support. Look for iPod news this weekend as well as a show we recorded before Derek became ill.
Sep 16 2005 10:30 PM (Swoopy)
One week. Are you sure? Yes, only a week. Still kind of like Groundhog Day around here. Every day is mostly the same. Without Bill Murray. He’d be kind of good to have around about now. However the good part about the routine and sameness is that for the last three days, Derek’s condition has remained largely unchained.
Some very minor ups and downs, mostly having to do with keeping his blood pressure at appropriate levels. He had a minor spike in pressure, but the reintroduction of his mannitol drip, that slows down his metabolism and lowers his pressure and heart rate some. Though we know the likelihood of their inaccuracy, his overall intracranial pressure numbers were on a general down trend today, which is the best thing for his brain.
For the last three nights Derek has had a new nurse, and we love him. His name is Reggie. I’ve always had a fondness for male nurses, because they’re as a rule very dedicated care takers and a special brand of person. Not the least of his gifts, Reggie is big enough to move Derek around if need be. He’s open and easy going, and reassuring and shares shaved head kinship with Derek’s dad. All of the staff caring for Derek around the clock, are doing an amazing job. And we’ve already started talking about what kind of cookies to bake them.
So, again, no call this morning. We’re settling in, starting to let our guard down just a little in the hopes that we may be on somewhat stable road. The goal was to get to the end of the week, and we’ve done that. So now we’ll move forward, one step at a time.
Thanks again for everything, I know I’ve said it a lot. But it has meant a lot to all of us to have so many people to reach out for, even if we’re not utilizing all of the great resources that have been offered yet, once we get over the hump and get a little sleep under our belts, we’ll definitely be getting in touch more.
This weekend I have plans to rest some, but work on doing some website clean up and modification and announce some upcoming shows, and most importantly catch up on everything else that has been going on around here while I haven’t been able to really pay attention. Have good weekend everyone.
Sep 18 2005 11:45 PM (Swoopy)
Today was Sunday, and for the first time we decided we would sleep in and not go to the very early hospital visit to catch the doctor on rounds. We knew he was scheduled for a CT scan this morning, and we would only be in the way. We got some much needed extra sleep, compliments of the magnificent staff at his hospital that allow us to rest easy now, knowing he’s getting the best of care.
Last night was another stable night, and it’s been noted through looking at the charting over the past week, that Derek’s blood pressure spikes around 8 pm, almost like clockwork. They now can target when to deliver his medication so that it at it’s most effective. The eerie part about knowing when his pressure is regularly high, is that he had the inital episode that began all of this around 7:30 in the evening. Another clue that Derek had underlying hypertension for awhile, and no one knew.
We are all in love with Reggie, Derek’s regular night nurse for most of this past week, I’ll just say that right now. He’s a special guy for sure, and I’m not just saying that because he’s been reading the forums too. 🙂
So, we’re on the road to stability, or so it would seem. This morning Derek’s CT scan showed that in fact his drains, which were not producing, might as well come out. Also, and I haven’t seen the films yet but I may get to tomorrow. I saw the CT from a week ago tomorrow, so the contrast will be interesting. The edges of the major clot are “fluffy” and early indicators that it is beginning to break down.
Derek received a couple of nifty staples in his head, and no longer has tubes sticking out of his brain. I’ve suggested that he could easily be frankenstein’s monster for Halloween. His pressure will be monitored very closely along with his other vitals that might show any indication that his intracranial pressure is on the rise.
He has a slight fever this evening, mostly due to fighting off the infection in his lungs. Still getting tube fed that lovely fibersource food to keep up his calorie load, and utilizing the cold blanket to keep his fever down.
His blood pressure was looking awesome, and some slight movements were occuring. He’s not as responsive as they would like, but the paralytic drugs will wear off slowly because of his slowed down metabolism too. His sedation is lightened, and he tries to breathe on his own, and the respirator won’t let him. It’s a good response, and the oxygen saturation in his blood is at 100%, the oxygen level through his ventilator is 60%, so his respiratory system is doing pretty good considering.
So, it would seem we’re wandering out of the deep woods. There’s a path ahead, and we know were it is, but we’re not quite on it yet. We’ll get a few more definitive answers when we go in the morning and see the doctor on his rounds.
Thanks for hanging with us. It was a good weekend, much better than last weekend. There is talk of having Derek in a chair sitting up, even if he’s not fully alert, by the end of the week. It will be quite a thing if we get there.
So, good things continue for Derek, and for those who love him. As will Skepticality. Stay tuned for a new show (previously recorded) tomorrow including the iPod winner announcement.
Sep 19 2005 10:45 PM (Swoopy)
I have to say, I’m starting to feel a little like Jay Leno. Every night, I have a monologue. I hope that no one is getting sick of it yet. I know that our world, although we’re beginning to adapt, is made up of Derek’s hospital stay, is just that – our world, and that everyone’s day to day doesn’t revolve around this. There is a certain level of tedium that is going to creep in, and if you find yourself not needing this updates for awhile, please let me know and I can take you out of the loop. That said, I also appreciate all the kind thoughts and nice words everyone has sent in being glad that they are updated, so that’s great. If you want off the merry go round though, do let me know.
Kim, our favorite day nurse, was still there when we went to visit in the evening. She’s an amazing woman, who has a long history working with Derek’s doctor, Dr. Weaver. It helps that they know each other so well, in that between them we always know what is going on with Derek during those early morning hours when he’s getting CT scans and chest x-rays.
Reggie let us know that they’ll be giving Derek a tracheotomy tube soon, because long term on a respirator is hard on the throat and vocal cords. They’ll also be able to administer medication for his breathing this way, and it’s a better situation for his immediate and long term care. While it sounds scary, there are huge benefits to this, and when he no longer needs it, the hole will heal as if it was never there at all.
Derek’s oxygen saturation is still good, and they lowered again the amount of oxygen he needs to breathe through the respirator. He’s also able now to take breaths on his own, and when entirely free of the respirator does breathe completely on his own. His lungs still need the rest, so he’s not going off of the vent just yet, but it’s another positive step.
At this point, he is completely off of drip medications of all kinds, and is receiving the medication he needs via IV push at regular intervals. His sedation is very light at this point, although for the CT scan in order to get a good image and ensure Derek stays still, they will give him paralytic drugs on a very temporary basis. The importance of this particular CT scan will be to make sure that now the drains are out of his head that there isn’t any additional pressure building and that the clot is still breaking down as it should be.
His next scan will be very early in the morning so that the films will be available to the doctor on rounds, and we got all of this great information from his staff because they know we like to see the doctor and review our situation as often as we can. So we’ll be there bright and early just after seven tomorrow, so we can see what’s going on. Hopefully more positives to report.
More baby steps toward what we’ll probably be calling more long term care. The immediate, keep alive measures have evolved into what we’ll be doing to prepare Derek for his long recovery road. Recovery is a great word, I’m glad we’re able to use it.
I keep saying “we” and really it’s a big “we” I’m talking about. We, the family and friends of Derek wouldn’t be talking about recovery if it weren’t for the amazing doctors, nurses and staff of North Fulton Regional Hospital. They work long hours, and have made Derek’s care their priority and it shows every time we see him. He’s being tended to so lovingly, and we feel cared about and cared for by this staff in the way they let us know what we can do to help Derek, to help them, and to help ourselves in these times. It’s a foreign world, and they’ve made it much more friendly for us. Without them, we wouldn’t be sleeping at night.
So, those are the highlights for now, more tomorrow and probably earlier too. Thanks for all the nice email we’ve been receiving, it’s good to know that Derek is in your thoughts and prayers (because if you pray..and you believe in it..and all that stuff…it’s OKAY…you can do what you do..and we’ll do what we do..and it’s all good in the end…whatever THAT is 🙂 ). We’re certainly very thankful for all of you.
Sep 20 2005 11:30 PM (Swoopy)
Derek’s got a brand new bed. Sounds like a blues song, but not really. It’s this nifty hospital bed with some hydraulics or some such thing, that actually tilts him, every so often, side to side and up and down some. This allows his body position to shift naturally and avoid the bed sores that people who are in bed this long, begin to be prone to.
Possibly because of the moving, and a slight change in antibiotics, we had a feverish Derek this evening, 102. The cooling blanket was in place and measures were being taken to lower it, but he is fighting infection in his lungs and so a temp spike now and then has been happening. His blood pressure though, was good as was his oxygen saturation level. Most of the breathing he is doing, with respirator assistance is still on his own.
The tracheotomy hasn’t happened yet, but when the whole of team Derek at the hospital has signed off on it and he is stable enough, he’ll be getting the tubes out of his throat and getting a more direct line. Probably in a day or so.
Derek did get a nifty head shave today though, per our request, to make it cooler for him and also easier to keep clean. I’ve always wondered what he’d look like with a buzz, and honestly I think it’s fabulous. I’m not sure he’d agree, but we’re going to take pictures when he’s on the mend, for posterity. His dad, in particular wanted to see, as he’s back in Jersey for the time being. For now anyway, father and son have the same hairdo.
We haven’t gotten word that his CT scan showed any abnormality, and there seems to be at this point no evidence that they need to reintroduce the drain system to his head. We’ll take the little victories.
So this is another day on that long road, that at this point seems endless. Even so, close friends met up with us and had dinner after the evening visit, to prove that we all still remember how to laugh and find enjoyment in every day things that aren’t hospital. It helps a lot.
In Skepticality type news, I finally got out that show I’ve been hanging on to. It was odd, hearing Derek’s voice. Usually it’s in my face or in my iPod or on my phone nearly 24 hours a day. It’s gotten very quiet in my world, and I didn’t really realize how quiet, until today.
I also have never said “um” or “so” that much, probably ever. So, I better ..um..work on that a bit. Thankfully we’ll have guest hosts with big brains and bigger vocabularies, and nonetosoon.
Thanks for hangining in there. See you tomorrow, same time, same forum.
Sep 21 2005 4:32 PM (Swoopy)
Welcome to a rare, but much anticipated afternoon update. This doesn’t necessarily preclude an evening update, we’ll play that by ear.
We slept in today and did not do the early morning hospital routine, and I think it did us all a world of good. We got a call just before we were leaving from the doctor that will be assisting with Derek’s tracheostomy, which is scheduled for tomorrow morning. We’re looking forward to that, as it will make everything easier for him and get the tubes out of his mouth and nose.
The limitation of the neuro trauma unit is that for extremely good reason, visitors are limited to two at a time. And so it’s generally routine we switch off and tag in and out of the room every ten minutes or so, that we all get a chance to spend time with Derek. As a rule of thumb, wife and mom get first dibs. So standing in the hall, still sleepy, I waited. But all too soon, Susan stuck her head out of the door and said something I wasn’t at all expecting: “he’s awake.”
He’s what!? Yep, no lie. I went in, breaking all the rules, and there was the man himself, eyes open. Since he’s still on a ventilator, he couldn’t say anything if he was moved to, and really in his half aware state, I’m not sure that was his intention. His right arm was quite active, and as I took the hand of the left – the side of his body most affected by the stroke – I got a strong squeeze. I squeezed back, and then so did he.
Derek, ever a fidgeter if ever there was one, has a bit of a bouncy leg. Anyone who has sat at a table with him and felt the tremor of that bouncing leg knows what I’m talking about. His right leg, the one most prone to bounce, even in sleep, was doing just that. We quietly explained that he was fine, and to just rest, that he had boots on his feet and a tube in his throat, and he had nothing to worry about, just to relax. And the initial restlessness seemed to pass.
His fever had just broken and he was drenched in a sweat, so we took turns drying his brow and face. His mom and Susan each had a hand, and so I went to the foot of the bed and rubbed the tops of his feet that stick out from the open toed compression stockings and boots, and his prehensile like simian toes grabbed my fingers, especially the left one, which was quite a surprise.
Such was his activity, with his right arm reaching to pull the tubes from his mouth that we had to hold that hand until it could be gently restrained so that he wouldn’t dislodge anything. He became sleepier and was resting again, by the time we left.
Blood pressure good, heart rate up a bit because of waning fever, which was on it’s way down thanks to the cooling blanket and Tylenol. All of his other necessary functions, breathing, digestion and such are all working. The addition of his trach-tube and getting the respirator out of his mouth will be a huge step and we’re looking forward to that.
One of the best parts of the glimmer of consciousness that we saw today was that his mom got to talk to him a bit, and he responded with squeezes and noticed her. She’s headed back to New Jersey tomorrow and this will send her home with a much lighter load to carry.
We’re all pretty high right now. We knew he was in there, but the physical response on his weakened left side was a real surprise. I’ll be interested to talk to his doctor about it. I have a feeling he’s going to surprise everyone, not necessarily with the recovery that he’s on the cusp of beginning, but with the extent of it in the end. This is a benefit of course of his age. It’s still early in what will be a very long process, but this morning was another positive moment that makes our day to day just that much easier, and the coming future days a little less trepidatious.
More updates as they seem pertinent. This one, really did. 🙂
Sep 21 2005 9:59 PM (Swoopy)
Our evening was about as eventful as our afternoon, more movement from arms and legs on both sides. Arm lifting, leg bouncing, toe curling and all that good stuff. Eyes open a little, but not a lot.
For us, now comes the difficult place between elation and worry. We’re thrilled he’s in there, and he’s moving. We’re scared that he’s in there, and confused or anxious and there’s not much we can do about it though we continually, quietly reassure him. This is complicated a bit by the fact that the ventilator stifles him and while I’m not sure he’d be making sounds, he really couldn’t anyway.
Every head trauma is different, but I recall my own (when I was seven) as being in a very fuzzy place where I knew things were going on, and I did want to participate but everything seemed to be happening far away from me and there wasn’t anything I could do about it. I was too fuzzy to be worried. I don’t have any memory of the accident or much about the recovery period, which is probably a good thing. It will be interesting to see if anything, what Derek remembers in the end. But our not knowing, what he knows, is the hard part for us right now.
Reggie took off the soft restraints they were using this afternoon, in an effort to make Derek as comfortable as possible. He doesn’t think that even though Derek has movement that his range of motion would be enough to do anything bothersome to his tubes. And that definitely won’t be happening on his watch.
The adjustable bed is just the coolest thing ever. And too, it seems like the most movement comes from Derek when he is trying to compensate for the way the bed is shifting him. The bed tilts at angles, slowly and gently, but the nylon covering on the bed allows Derek to slide some and thereby changing where he’s putting weight on his back and hips. He hasn’t developed any sort of bed sores, and since they have been taking such great precautions with him, that doesn’t look like it’s going to become a worry at this point.
Reggie also planned Derek’s evening sedation so that he would be more awake for us, but would be resting comfortably soon after. His oxygen saturation levels and blood pressure is good and his fever is somewhat reduced; they’re still giving him Tylenol for that.
Derek is scheduled for his tracheostomy in the morning, as well as another CT scan, so he’s going to be a busy guy. The trach means bye bye goatee, so he’s going to be hairless for awhile. This is really good for keeping him clean and cool though, so I suspect he won’t mind, and it’ll all grow back pretty quickly.
We’re going to be there bright and early to see him before the procedure, which is done bedside and will only take around 20 minutes. This will give his mom a morning visit, and then she’s going back to New Jersey to catch up on things there for a bit. She got exactly what she was hoping for before she left, a chance to look Derek in the eye and have him squeeze her hand. Great timing Derek, as usual.
So we’re going to have a little something to eat and get to bed early. Tomorrow will bring new stuff, and hopefully more good stuff. I think we can start using the word recovery in earnest now.
However for the immediate time being, we’re asking for immediate family only to visit. Since Derek is more awake, he’s also more easily agitated, and what he needs is plenty of rest. A good part of this evening, we left him one on one with Susan, because that seemed to calm him the most. Some stimulation is good right now, but too much stimulation is just that..too much, right now.
We’ll definitely let people know when it’s good to come visit, and hopefully that time isn’t too far away. But for now we’ll keep you updated and thank you for understanding why we’ll ask people not to visit Derek at this time.
I got some really amazing email following this afternoon’s update. Much beer has been drunk in the name of Derek today. Tip your waitresses.
Sep 22 2005 11:50 PM (Swoopy)
Today was a busy day, in Derek’s world anyway. We visited early as he was scheduled for his tracheotomy at 9, and this gave him mom a chance for a goodbye-for-now visit before she headed back to New Jersey for a couple of weeks. He was moving quite a bit, but still sleepy. We got a chance too, to catch up with Dr. Weaver, the very same neurologist that treated Derek from his first moments at the hospital and he’s very pleased with what he’s been seeing.
Derek’s early morning CT scan showed a large reduction in size and density of the major clot, so the necessary reabsorbing of blood is occurring and he has no present hydrocephalus, or excess fluid on his brain, so no drains are necessary either at this time.
Dr. Weaver again checked for that silly BB, which isn’t truly in his sinus cavity but more subcutaneous and easier to get to then first thought. Since Derek is on the road to stability he’ll be getting that BB out soon so that he can get that all important MRI. His mom has plans to turn it into jewelry. Being able to do an MRI will allow the doctor to further diagnose the probable cause of the initial bleed and begin to formulate preventative care options further down the line for reducing his hyper-tension and assessing the probability of another incident.
Susan and I returned to the hospital at the noon visit to check out Derek’s new bling, and really love being able to see his whole face again. Getting the respirator out of his mouth, along with all of the straps that kept it in place and mouth guards and such, really helped. His mouth was still a little foamy, but a lot of good oral care was done to clean out his mouth and we could tell he was so much more comfortable, even though sedated.
His sinus was draining quite a bit too, with every tilt of the bed and all the evidence shows that his lung condition is much improved. His temperature was up just a little bit, but his blood pressure was the lowest it’s been and oxygen saturation was good as well. He’s down to 45% oxygen on the vent, that now goes through his trach tube instead of through his mouth and nose, which is again a great thing all around.
We saw the surgeon who assisted in the bedside procedure which took only about 20 minutes, and even though Derek has a pretty big neck, the doctor said it went wonderfully with almost no bleeding. Before we left at noontime, Susan and I were treated to two yawns from Derek, opening his mouth very wide, moving his tongue a little (which he hasn’t been able to do for two weeks). It was awesome to see, though you can tell that his mouth will need a little TLC for awhile.
The last procedure of the day was a direct feeding line to Derek’s stomach, which allows the nutrition to go right where it needs to instead of through his nose, so again no more tubes going down his throat. This line will also close up and heal very quickly when it’s removed, but is the most comfortable way for him to get food into his system now. All of these things, when consciousness begins more in earnest will make him much less fussy, we hope, and make it easier to communicate, when he’s ready. We got the scoop from Reggie when we went back for the evening visit, which means we did hospital morning, noon and night today.
All of these procedures made for a busy day, and Derek was sedated for most of it so while we were treated to his characteristic leg bounce during rest and sleep, and hand movement, there wasn’t any eye opening or as much “communication” today as yesterday. Though Reggie, we were told today was asking Derek for specific, right side or left side hand squeezes last night, and got exactly what he asked for. I would suspect we’ll be getting more of that ourselves in the next few days as the sedation lifts, which will be exciting.
Even from the noontime visit, his mouth and lips looked much better, and his mouth was closed normally, the swelling in his tongue seemed reduced. He still looked peaceful and much less fussy and more comfortable, and we hope that’s a trend that continues even when he’s not as sedated.
We’re glad to know he’s resting quietly tonight, and so we plan to do the same. It’s so much nicer doing the daily report when it’s good stuff, and I bet it’s nicer to read too.
Though I will say we got our first medical invoice today: oi. It was for the initial 911 response and ambulance transport from the immediate med (haven’t seen their invoice yet) to the hospital. For those who might wonder, just the initial ambulance response costs $500. That doesn’t count the cost per mile (which wasn’t far), oxygen and other stuff that goes with it. Yes I did say good stuff..it wasn’t a bill, the insurance company gets that, it’s an invoice. 🙂
Without the wonderful initial response team that kept Derek from really aspirating a lot during his first unconscious moments and getting him on oxygen right away, his outcome would not have been as good as it we’ve been experiencing, and that is of course invaluable. Also the EMT’s were very kind and reassuring to Susan and I when we arrived at the hospital in those first panicky moments, and their concern and kindness meant so much.
Our best to everyone, and thank you too for the cards and snacks and things that keep coming to the house. We’ve started a sort of shrine of cards and gifts on the dining room table, for when Derek comes home. Which if we keep progressing at this rate, seems like it could be sooner than later.
Sep 23 2005 9:30 PM (Swoopy)
Really short update, as there were no procedures or new information or really anything much to report from today.
Derek’s blood pressure, temp, heart rate all the important numbers, in the good range. Still movement on both sides, arms and legs, eyes and head, but not much alertness or recognition today. We’re still getting used to the sounds of his trach-tube instead of the ventilator and all the gurgling that it allows him to make. It’s perfectly fine and normal, as is the small air leak around his tube. He’s doing pretty much all his own breathing and no longer has continuous suction for his lungs, more signs of healings.
The man himself, was moving and snoring a little, but mostly just resting. He’s done a lot of hard work in the last couple of weeks and now that he’s stable, he needs some sleep. This kind of plateau is expected.
Stable and boring is fine with us. We expect that’s what we’ll be having for at least the immediate future.
We seem to have new (to us, not the facility) staff by day and evening for the next couple of days, and honestly that makes us a little antsy. Also, woe betide them, as they are faced with us: question askers that stick our noses in Derek’s care regimen to find out as much as we can.
Unfortunately hospitals are not quite like restaurants, you can’t request your favorite waiter’s section. If Reggie and Kim didn’t need sleep, we’d selfishly keep them and their excellent communication skills and bedside manner all to ourselves. And Dr. Weaver would be there, whenever we are. Actually I’m sure he nearly is, he doesn’t get much sleep himself I suspect.
We’ve been a little spoiled. Make no mistake, Derek’s care is continually excellent, but we’ve been lucky to meet some really wonderfully people that just happen to be his care-givers, and if we could we’d have them around all the time.
I myself am a little fluish, and trying not to give it to anyone. I’m resting up over the weekend, so I can pour on the steam next week. Susan will be going back to work, so I’ll be doing the morning hospital rounds by myself and then probably earlier evenings we’ll do together so that we’re not getting to bed so late.
So, quiet and stable are the words of the day. If only the gulf coast states were the same. Local news was reporting that they have already canceled some school here for part of next week to save on energy and fuel costs. Anyone else find that scary?
I know if Derek were watching that on the news, he’d be all over that one and we’d never hear the end of it. Hopefully soon.
Have a good weekend, be safe. I have designs on resting on the couch with the laptop and reading and reading posts. And writing some much needed Whimsicality.
Everyone have a safe weekend, please.
Sep 24 2005 10:05 PM (Swoopy)
Very short and sweet today.
The big news being that Derek is now off the respirator and is breathing entirely on his own.
And while he still has the trach in place, it’s not connected to the respirator, he has monitors connected that keep an eye on his breathing but he’s doing all the work. His oxygen level is still good, and blood pressure is looking really good as well. Being it’s the weekend, doctors are scarce as we’re not the sickest kids on the block right now. Nursing care continues to be excellent, despite having to learn new faces every day.
We did wake the guy a bit when we visited at noon, per the nurse’s instruction, but when she saw his breathing get faster and the mild agitation that occurred, we decided that over stimulation might not be such a good idea quite yet. On the up side, he quieted down pretty quickly with a few soothing words from his Susan, and we stuck to quiet hand holding for the rest of our visits today.
I suspect Monday will bring more to report as we’ll be checking in with the doctor on his morning rounds. For now, although he has short periods of wakefulness, spontaneous coughing and yawning, it’s pretty quiet in Derek’s world.
Selfishly, we wish there was more response to command, but we also know that healing requires a lot of rest and wakefulness is not a priority to his body right now – dealing with that clot and recovering from the pneumonia is. These things are on the mend, and keeping the rest of the body parts comfortable and functioning while he heals is what we’ll do now.
On a related note, the great guys who take care of our cars, who have always been enamored of Derek’s big truck, found out about his condition today when Susan took her car in for service. When they called to tell her it was ready, they also told her there was no charge. It’s the little things that bring smiles.
Best to everyone at home and abroad for your continued kindnesses.
Sep 25 2005 9:40 PM (Swoopy)
Here we are on Sunday again.
Because Susan is going back to work in the morning we adapted our schedule some and went to the noon and late afternoon visits.
Because of leakage (of air) around the opening of Derek’s trach-tube and simply from the doctor’s recommendation in order to keep the number of respirations up, and his blood oxygenation levels up there too, Derek is back on the ventilator. He’s getting 45% oxygen, and honestly I’m glad. He’s more easily alert with the extra O2, and we saw more signs of life today than yesterday when he was doing all that breathing on his own.
It’s hard work to heal, and his lungs are better, but not yet great. More time with extra oxygen will make it easier for him to recover. Although of course this is mostly supposition on my part, and from seeing what a little extra oxygen can do for someone who is fuzzy, groggy, sleepy or hung-over. 🙂
I have designs on talking to his doctor in the morning, seeing what the next steps are – if there are any right now. And when I know, so will y’all.
Also because of his troublesome trach tube, they may do some adapting of the way it’s inserted, possibly a longer tube into his throat or some other options. And that’s something else I’ll find out tomorrow. Derek’s neck is large and that has presented a challenge from the beginning. Even though his respiration and oxygenation numbers have stayed in good range, and the leakage isn’t presenting a problem, they’d still like to stop that air from escaping – a tighter seal is better for him.
Blood pressure is good, he’s still receiving medication for that, and his fever has been very low-grade. They are monitoring his kidneys for signs of stress. He’s been filtering a lot of medication and junk through those kidneys and while his values are improving they want to keep an eye on that. It’s all about maintaining and repairing the body while the brain heals at this point, and that’s a special dance in itself.
There were a few lucid moments with Derek today, Susan and I got hand squeezes when requested. There was a lot of rapid eye movement in his sleep today also, so we know he’s thinking about a lot of stuff, or dreaming some interesting things.
Beginning tomorrow we’re starting a somewhat new schedule. I’ll hit the hospital in the early morning, and Susan will hope to get off work late afternoons (if she can manage) and we’ll do the 4-6pm hour visit instead of the late evening, so that our nights will have a little de-stress time built in to them and everyone gets plenty of rest.
So it was a pretty quiet weekend for us, hope it was for the rest of you. Best to everyone, and continued thanks.
Sep 26 2005 10:52 PM (Swoopy)
Monday Monday….la la…la lala….
Susan went back to work today, and as expected was greeted with plenty of heartfelt condolences and curious questions. It’s a big help to work with such nice people.
We did well with our schedule today, and Susan and I both got to “see” Derek see us today. Little flickers of recognition. A little spontaneous coughing, a couple of yawns. Some sleep, and some activity too.
In doing Derek’s bathing and clean up today the nurse, Courtney whom we like very much, said that Derek was reaching to stop her from some of the things she was doing. Another good sign for us…a surprise for Courtney too I suspect. She is pleased by the amount of movement he spontaneously does. So are we.
Mostly fever free, blood pressure up a bit in the evening, but oxygen saturation very good, despite the gurgling that his trach tube makes. It’s merely a function of his lungs getting better, and all the stuff that we constantly blow from our nose, cough up and swallow when we’re sick. Only Derek can’t do all of that stuff as spontaneously as we can, yet. It’s not fun to listen to, but his numbers indicate that his lungs are getting better. The respiratory therapist thinks so too.
Another mostly quiet day. And that’s what we’re expecting for awhile, and very grateful for.
And lastly, as if he didn’t have enough to worry about, Derek’s got pressure from Satan to get better:
Sep 27 2005 1:30 PM (Swoopy)
Tuesday Morning Report
I know it’s no longer Tuesday morning, but that’s when I was at the hospital last. 🙂
Derek is having a sleepy day. A few yawns, but not much to report. He was getting his breakfast, three yummy cans of fibersource through the direct line into his stomach, when I got there just before 8.
His fever was low-grade, and he was scheduled this afternoon to have his trach tube lengthened to get a better seal on that big neck of his. However, in spite of the leakage his oxygen saturation level was at 100 nearly the whole time I was there, with exception to a cough or two.
I didn’t get to see the doctor…again! Yesterday he was in early early, and today it’s likely he was in surgery and though I stayed until 10 hoping to see him, no such luck. Though the neuro trauma physician and the one who has been dealing with everything that isn’t brain, was there. I didn’t get to talk much to him either because he was dealing with someone sicker than Derek.
He may be resting quietly and not doing any songs or dances yet, but he’s not the sickest kid right now. And that’s a step up. More after the evening visit.
So cool to see people posting. Thanks!
Sep 27 2005 9:00 PM (Swoopy)
It was a pretty slow day, until right here at the end. Morning visit had a sleepy Derek, with little alertness. Mostly I stayed hoping to catch the doctor, who didn’t do rounds when I was there and was likely in surgery this morning. Foiled again. Word was that at some point in the day Derek would get his trach tube adjusted so that it wouldn’t continue to leak air around it. Even though it wasn’t affecting his oxygen saturation numbers, a tight seal around that opening will be much better for him.
When we visited early evening, Derek was prepped for the procedure and laying flat and propped up on pillows, sleeping pretty soundly. He did wake up some and we had a lot half alertness, and some arm and leg movement. His day nurse also reported that he was pretty active, especially on his left side, which is great to hear. His blood pressure was good and he was fever free.
The long promised tracheotomy adjustment did come to pass this evening while we were having dinner, in fact Susan just got off the phone with Dr. Akarino.
The trach procedure took longer than expected, and the doctor wasn’t pleased with the way Derek’s trachea looked, namely red and irritated with more bleeding than he would have wished for. But the longer trach tube is in place now, and Derek was sedated so he felt no discomfort during the procedure.
The doctor will do an endoscopy tomorrow to get a better look at Derek’s throat and see what the cause of the irritation is, perhaps it was just the ill fitting trach tube. I suspect more respiratory therapy is in the immediate future.
We also requested to see Derek’s most recent CT scan so that we can compare to the first one we saw, and see how the clot has progressed for ourselves. We’re certainly not doctors or trained to read the films, but knowing what the clot looked like before, it will be interesting to compare even with our untrained eyes.
More tomorrow, and hopefully better news about his respiratory situation. Derek was still on the ventilator and was up to 65% oxygen, up from 45% the past few days. The body and especially the brain, likes lots of oxygen, so bring it on.
Sep 28 2005 8:52 PM (Part I – Morning) (Swoopy)
We had a phone call this morning, the first in quite awhile and so of course very unsettling.
The planned adjustment of Derek’s trach tube that took place last night, wasn’t the fix the doctor’s were hoping for. So the trach was removed and he was intubated through the nose. His numbers stayed strong, he was just coughing and very uncomfortable with the trach and it hadn’t solved the problem, so it was better at this time to remove it and let him and his agitated throat, rest some. He was sedated then, and is still on a drip this morning and resting peacefully. He is on the respirator with 60% oxygen but is breathing on his own, the respirator is just there to make sure he’s taking enough breaths.
His blood pressure, oxygen saturation level and respirations are actually all pretty much the same. He was running a temperature of 102, but this is what happens when the body is fighting infection. After speaking to the doctor who is everything BUT neurology, they’ve determined that the best fix is a rigid trach tube. Initially the best approach to a tracheosotomy is the least invasive, and the flexible tube that Derek got initially would have been the easiest and best thing at the time. Because of the size of his neck, getting a tube that fits properly is very difficult and keeping the tube in place to reduce any erosion of his trachea while the tube is in, is critical, especially as he’s trying to recover from his lung issues.
This tube will do the job, but it’s insertion is more difficult and is actually surgery where they will need to anesthetize Derek, and everything that goes along with this kind of procedure. They were hoping the wouldn’t need to do this, but now it seems like the best option and they’ll do it as soon as possible. They’ll need to order the specialized tube, and schedule the operating room and all that stuff, so as soon as possible would probably be tomorrow at the earliest.
They want to not have him intubated through the nose for any long period of time, as it makes the drainage from his sinus and lungs more difficult. All in all, the best way to look at it, is just a necessary equipment change. The computer works fine, but the mouse is broken. Nothing wrong with the computer, you just need a new mouse. So this new tube is the mouse we’re looking for.
Now..in cool news..cause there IS some.
Not only did I get to discuss Derek with Dr. Akarino (everything but the brain doctor) and his team, and the night doctors who were coming off shift who had been with Derek all evening, but I got to see and talk to Dr. Weaver (brains) too. Derek was scheduled for a CT scan this morning before all the fun happened. But, because he was sedated, and resting comfortably and there really wasn’t a reason not to, Dr. Weaver decided to let him get the CT anyway.
Susan had really wanted to see the films of his more recent scan, as we had seen the initial ones and were hoping to see what the progress was looking like. I mentioned to the nurse that if he could let Dr. Weaver know we were wanting to see those films, that would be great. Before I knew it, Dr. Weaver had been paged, he’s a busy guy and I really didn’t want to bug him. But not only did he come back to the room, he went and picked up the films of the CT they had just done and let me see them. He had the first CT (from just after the “event”) and today’s. The word of the day is …wow.
If you imagine the image of Derek’s had as a cantaloupe, and you can see the rind and then the melony insides floating in the juice. On his first scan the clot(s) appear on the scan as solid white spots, in this case it looks somewhat like someone had put a chili pepper (the big ones) across one side of the melon. On today’s scan. There’s no pepper at all. 🙂
Dr. Weaver noted that there is some ventricular swelling left, but not much, and also that there isn’t any excessive intracranial pressure or excess fluid on the brain. All fantastic stuff to hear.
So once we get the rest of the body recovering, the head is coming right along. The films are staying with Derek for now, and Susan will get to see them this afternoon. But of course I called her right away when I saw them. The signs that his head is doing exactly what it should, and a little ahead of schedule, is exactly what we needed on a day that had a slightly shaky start.
– swoopy (see part II for evening report)
Sep 28 2005 9:42 PM (Part II – Evening) (Swoopy)
It seems either there is NOTHING to report, or everything to report. I’m not sure which I like better. 🙂
Susan and I showed up at five and that pesky intubation tube in Derek’s nose, gone. I honestly hadn’t noticed, and Susan said..”look!” And I was ..spaced out and not paying attention..and then I noticed that the tube wasn’t in his face, but there in his throat was a very substantial trach tube. The tracheosotomy fairy had apparently been there.
The neuro unit has emptied about four beds today, and honestly the ward was a little like a ghost town. Our afternoon nurse had gone early because they were over staffed. Luckily the respiratory therapists who have been working on the trach issue, and who are very nice guys as well as uber smart and stuff, were sitting together taking a short break and so we got the scoop.
It seems that Derek was leaking air through the hole left by his trach, which is somewhat of an abnormality, it’s meant to close. So they were giving him air, only to be losing some of it through the hole. With the assistance of the whole team and Dr. Akarino (everything but brain doctor) they were able to properly place the longer trach they had trouble with last night. The very long tube that goes down Derek’s throat ends up just before the bronchioles divide to the lungs, which is just perfect. The big stiff tube is formidable looking, and his throat is stitched some around it, but it’s obviously a very good fit.
Since this was the same procedure that we’d already signed off on, additional consent wasn’t required, and also since we had consented to the bigger procedure involving the rigid trach tube, unless there had been a complication we really didn’t need to be called. It was a weird, but nice surprise.
They’ll monitor this new tube very very closely, but all indications are good. Whereas last evening the insertion was difficult and his trachea was irritated. Today his chest x-ray looked much better, getting the tube out of his nose so quickly further reduces the chance of further sinus infection and his breathing was very stable and quiet. Their hope is that this will also allow them to continue to back off of the oxygen he’s getting, and they have already reduced from 65% this morning to 50% this evening. He’s still doing his own breathing, and if this tube continues to do well, they won’t need to do the surgical trach. We’re very hopeful.
Derek, still sedated, had the same pressure and oxygen saturation numbers as earlier in the day – which were all fine, and it seemed that he was barely feverish if at all. His tube fed dinner was being monitored, and getting a drink of water through it as well. Some of a paralytic drugs can slow down the metabolism, so they monitor all of his nutrition really closely. He gets about 1000 liquid calories a day.
Susan got to see the CT scan comparison that I saw this morning, and she was just as enthused by what she saw. Obviously the folks in the neuro trauma think we’re pretty nifty too, because there we were standing in front of the lighted panels on the wall, CT scans illuminated in front of us, pointing excitedly and chattering as if we had any real idea what we were looking at. Actually, it is pretty obvious. Old CT has this big ugly crescent shaped white spot, covering about a quarter of the brain surface area. New CT..pretty much just brain, and a couple of small spots that look like where the drains had been previously.
So the quest for a new streak of call-free mornings begins, because this morning sort of ruined it.
I’m pretty confident that this was, in the course of things, a pretty important day. There were significant realizations about Derek’s progress, and I think that with this new breathing system in place, that we’ll truly start on the road to getting “there”, and a lot of that has to do with the amazing care Derek is getting at the hospital. I’ve been in situations caring for loved ones at much lesser facilities – and our experience at North Fulton has been above and beyond any hospital or doctor’s office care for that matter, that I’ve ever had. And I’m so so thankful for that, because those excellent caregivers allow Susan and I the peace of mind we need to get to sleep at night, and they are a great source of comfort to us when we’re at the hospital visiting.
Tomorrow morning is on it’s way, and I’ll be interested to see what it brings. More updates when I know. 🙂
Sep 29 2005 10:32 PM (Swoopy)
There was no early morning phone call today, and that always makes for a good start to the day.
Derek’s trach tube is still doing well, his fever was down and all of his numbers were good. My morning visit was short, because even though he was just off of the sedation drip, he was sleeping pretty soundly. We have the good fortune of having our favorite day nurse, Kim, back with us (at least for part of today) and she had designs to give Derek a good bath and shave, and I didn’t want to keep her from it.
She also let me know that Derek could get the staples removed from his head today, and when Susan and I visited in the evening they were in fact gone. Derek was, as promised, neatly shaved and was somewhat but not a lot more, awake.
Reports from the nurse, one of our other angels of mercy Courtney, were that Dr. Weaver (brains) had been giving him verbal commands for left and right side activities, and that Derek’s strongest response today was on the left side. This of course impressed everyone, who expected that initially his left side might be weak and compromised do to the clot being on the right side of his brain. While of course it’s too soon to know what and where there may be damage and weaknesses, this is certainly a good sign.
This is a resting day, with little to be concerned about as Derek is under excellent care, and presently appears to be doing much better with his breathing. The noisy respiration and the large amount of sinus drainage he was having previously, wasn’t in evidence today at all. Coupled with an improved chest X-ray result, it looks like his lungs might be on the mend as well.
Kim also said that soon she hoped, even if he wasn’t really awake, to try and get him up and into a chair and out of bed for short periods of time. That would of course, be fantastic.
When the sedation clears, and he rests up from all of the fun of the last couple of days, we’re hoping we might begin to see a return to some of the heightened awareness Derek has shown at times.
Our thanks for everyone’s continued care and concern, it keeps us afloat through the scary moments. There WILL be a new show this weekend..as soon as…I get..some…zzzzzzz…..
Sep 30 2005 11:59 PM (Swoopy)
Not much to report. And that’s good 🙂
I did sleep in and go at noon today, and then Susan and I returned at the evening visit. Sleepy Derek pretty much most of the time. Good blood pressure, good oxygen saturation, good respiratory rate and oxygen being given is 40%, so they are slowly cutting that back. Another good sign.
His respiratory illness seems to be really quite a lot better, as the rate of coughing, necessary suction to clear his trach, and runny nose are all much less frequent. All biological functions working well, and fever was low grade.
Susan and I went with a large contingent of friends to see Serenity tonight (late show), and it was even more awesome than the pre-screenings that we all saw earlier in the year. I can’t wait for Derek to see it, though I suspect it will be long out on DVD before that happens. Although by then maybe there will some deleted scenes and stuff for him to enjoy.
And speaking of good friends, because of the concern of the people Derek works with at Brown and Caldwell, and the people he works for, we found out some very important information today regarding his health insurance. We have been going with the knowledge that Derek’s coverage would take care of 90% of medical expenses. And 90% is good…but 10% of probably an astronomical number before we’re through, is quite a lot to be concerned about.
Today we were told that there is a cap to the out of pocket amount, including deductibles. This will widdle down that astronomical number by a huge margin. We’re all breathing easier ourselves for having that news.
And lastly, in the cool department, the podcast that Derek and I do was in our local entertainment guide called Creative Loafing this week. It’s their Best of Atlanta 2005 issue, and Skepticality was listed as best podcast. Derek would be so jazzed, I’ll have to tell him tomorrow.
Have a good weekend yourselves, and not that I’m biased or anything but DO go and see Serenity. Even if you don’t like space movies. It has a great message, fantastic effects and wonderful performances. Derek would SO want you to go 🙂
Oct 2 2005 9:20 PM (Swoopy)
Derek had a pretty quiet weekend, much more sleepy on Saturday with a few wakeful moments. But Sunday, both early afternoon and late evening visits, we had a pretty alert guy on our hands.
Arm and leg movement on both sides, head movement too. Facial expressions as well, furrowing brow when something is uncomfortable or there is an unexpected noise. Slight smile when he’s fussed over – which is constantly. His eyes move from person to person in the room, and when we change sides of the bed, he almost always moves his gaze to wherever Susan is. Some hand squeezes on command too.
Also Sunday morning Derek was off the respirator and breathing completely on his own for ten minutes. This is something they will step up over time to help his lungs get stronger. His trach still looks good, so for the time being there hasn’t been further talk of switching to the rigid tube. He’s down to getting 30% oxygen, which is another step in the right direction.
Fever is barely existent, and Derek runs hot as a rule, so 99 is not something we’re concerned about. Good blood pressure numbers, mild rise at night still, but not nearly as much as before.
They’re really making a point to tilt his bed and raise his legs, and put him in a different position every few hours so that he doesn’t develop any sores on his back or hips; the pressure points that he rests on in bed. Even though his bed turns him, they continue to do everything they can to keep him comfortable, and it’s really nice to see that they pamper him as much as we would at home – except that they have all the cool toys and a tireless staff.
The only bad thing about when Derek is awake, is that it’s harder to leave when visiting hours are over. We have a little separation anxiety.
We’ll be interested to see, when Monday morning rolls around, what the doctors have to say – if anything, about how he’s progressing and if there is a next step to think about, or just more of the same. Slow and stable is fine with us.
Hope everyone had a nice weekend, fall is definitely here.
Oct 3 2005 8:51 PM (Swoopy)
More face time with the man today, as well as a short confab with the doctor (filling in for Dr. Acarino, everything but brains)who says Derek’s chest x-ray looks better and better, and that from all the reports and from what he can see, Derek is doing awesome. I know that the doctors know more than us, but…we knew that already. 🙂
The morning visit was about to be cut short as Derek seemed to be sleeping, but then he woke up quite a bit, and was quite alert. He turned his head some from side to side, noticing me, noticing the tv (which we keep with the sound low on CNN) and noticing the doctor when he made rounds.
The best of all though was the smiling. Since his bed was set to turn him side to side slowly, I would stand on the side he was tilted toward, and when the bed shifted, move to the other side. When I would leave one side for the other, Derek would smile when he turned his head to my direction. It was like he didn’t expect there to be someone on the other side, and he was surprised, but glad. It was really neat.
Lots of glowing reports from all of the nursing staff who are just really excited to see all of Derek’s alertness and improvement over the past few days too. Make no mistake, he’s not talking or evening trying to. Nor do we know if he knows or remembers or thinks a thing, but all signs point to recognition of a sort. He also does follow simple commands most of the time such as, squeeze this hand, now squeeze that hand, look at me, look over there. I couldn’t be more impressed if he was reciting soliloquys.
Yesterday Derek was breathing on his own for ten minutes. Today he was off the respirator for nearly two hours. This is a sign that his lungs really are in good shape. After the workout though, our evening visit was mostly quiet, though he had a rough coughing spell that woke him up and so we all got a little bit of seeing him, and him seeing us. And then he drifted off comfortably to resting again.
Slow and steady, but good. Can I tell you some of the cool things that we’ve received? Derek’s office in Walnut Creek sent….a penguin! A big stuffed one. We told Derek about it, but Susan also explained that he’s going to have to share it. Our friend Mur sent Susan and I a care package that contained the world’s softest and fuzziest socks. And..some sinfully good bread. Warm, soft, fuzzy feet..when you’re weary, are just the best. We agree. The cards, the phone calls, the well-wishes. They mean a lot to us.
So thank you, everyone, for the kindness and the offers of everything under the sun. I have EVERY email tucked away, and every everything else. The man is going to have some serious catching up to do, when the day comes.
Oct 4 2005 9:38 PM (Swoopy)
As expected, Derek had the BB in his brow removed and now has just two small stitches next to his left eyebrow. This clears the way for the MRI that Dr. Weaver (neurologist) has been hoping to do. And in fact Derek is scheduled for the MRI tomorrow. We’re all looking forward to seeing..what there is to see.
Derek trach looks somewhat irritated and the possibility still exists that they may need to use the more heavy duty tube on him, so we’ll see then too if that comes to pass.
The coolest news of today was that Derek spent over four hours off of the respirator, breathing on his own. He was actually off of it when I was there this morning and sleeping very peacefully too.
He woke up some for the evening visit and that gave Susan some nice time with him. The goal in the evenings is having him wakeful enough to notice people but then sleepy enough that he’s no longer awake when we leave. We have a little separation anxiety, so it’s hard when visiting hours are over, when he’s still got his eyes open. Our plan was successful though, and after some soothing from Susan, Derek drifted back off just before we had to go. Being off the vent is good for his lungs, but is of course a tiring exercise. It’s a tradeoff we’ll take.
Good movement from hands and feet today, head turning too. And I managed to catch him yawning while I had one of those Oral B brush up, fingertip toothbrush mouth freshening thingies on my finger. He doesn’t like opening his mouth, because usually it means someone is going to use suction, so just getting in there to clean his tongue is nearly impossible. I let him bite my finger pretty substantially yesterday, trying. But today I caught the mouth open wide, and I was able to get some of the stuff that collects in there, out. He does get really good oral care from the nurses, but we’re a little obsessive Susan and I, and we were dying to get in there. Think about your worst case of morning mouth, and then multiply it by a few weeks. Not pretty.
So tomorrow looks to be a busy day, with finding out about the future of his trach tube and his MRI. I’m not sure if they’ll sedate him for that, or just hope for him being sleepy, because as far as I know you have to stay really still while they scan you.
We have the BB in a container that the hospital gave us. It’s about the size of a ..BB. It has a place of honor on the table next to the many many cards and stuff that are waiting for him.
Oct 5 2005 11:30 PM (Swoopy)
Very quick..late night, but not much to report. So late night, not fun 🙁
Not much to say – okay. 🙂
Derek was awake both this morning and this evening for a stretch and spent more of today off of the respirator breathing on his own, than not. His numbers were good all around, and he went for his MRI at 9 this morning.
No report yet from the doctor about what there was to see there, but we’re expecting to hear more tomorrow.
Reports from Steve, Derek’s day nurse today – I think he’s secretly Reggie’s twin, he’s so cool – were that Derek was in pretty good shape. This is an impression from a nurse who hasn’t had him before, so we were impressed. Steve said that Derek followed a few commands for him, including one I’ve not been able to manage yet – to open his mouth and stick out his tongue. The man NEEDS his tongue cleaned. And Steve got it done, and with Derek’s help no less. I guess it’s that male bonding thing.
Also today came the first mumblings that Derek may be headed to a new facility in the near future. His stay at the hospital is guaranteed through Sunday, but after that he’s up for evaluation of his status. It’s common for long term patients who need a lot of respiratory therapy to go to a facility that has expertise in weaning people off of a ventilator. Such a place had a representative in hospital today evaluating someone else, and they looked in on Derek while they were there.
Further discussion with his nurses and respiratory therapist though, lead us to believe that since he’s doing so well only having started to get off the vent this week, and is already up to being off of it for many hours at a time, that moving him might be unnecessary and not beneficial in the long run. When he’s ready to participate more in rehabilitative therapy, more alert, more awake, following more commands and such, then he’ll be ready to move to a facility that specializes in that kind of care.
We’re looking into all the options, and of course what we can do within the constraints of his insurance plan. But we’re looking at him going to The Shepherd Center. It’s ranked number 17 on a list of Best Rehabilitation hospitals in the country for 2005 by US News and World Report. They have a great brain injury center, so hopefully they’ll be able to offer Derek some excellent post hospital care to get him home and functioning eventually. The only downside is of course, it’s downtown on Peachtree Road. We’ve been a little spoiled with his hospital being so close to home.
Okay, so did I say not much to report? I guess I fibbed. In any case, the discussion about if and when and where Derek will be going is something we’ll be doing more of in the coming days, and we’ll definitely let everyone know what’s going on with that, when we know.
Thanks for hanging in there with us,
Oct 6 2005 9:30 PM (Swoopy)
Quiet day really, so I’ll keep it very short.
Tomorrow they will be finally putting in Derek’s rigid trach tube. They are thinking that since the tube they have been using is so well placed (but not a permanent fixture by design) they will insert a guide down the current tube and use it to place the new one. In theory they should be able to do it bedside and it won’t be the difficult procedure they first thought. Also his lungs are in better shape than when it was first proposed, so all around it should go well.
Dr. Weaver talked to us a little about the results of Derek’s MRI. The scan showed no evidence of aneurysm, tumor or AVM. This means he doesn’t have an ongoing issue in the brain, and that his bleed was very likely due to hypertension causing a small vessel to burst and bleed. There is still some old blood left from the initial bleed that is reabsorbing and dissolving that didn’t show up as well on the CT scan as it did on the MRI. But there is no evidence of any additional or ongoing bleed of any kind. These are all good things. It’s likely he’ll have another MRI in three to six months. Where we’ll be or what we’ll be doing then, is pretty much anyone’s guess. Mostly likely rehab of some sort.
Derek was off of the respirator for over six hours today, but was somewhat alert and not too sleepy at the either morning or evening visit for someone who had been working that hard all day. However, we’re pretty tired and going to rest up for tomorrow. Every day brings a little something new, but every day also seems to show us some improvement, even if very small. We’ll take the small stuff.
Oct 7 2005 11:26 PM (Swoopy)
Derek’s new trach wasn’t able to be scheduled today, so it’s been rescheduled for Monday. It really isn’t a pressing matter, so the fact that the other doctors were too busy with more critical matters to get to it, isn’t a problem at all. He’s breathing very well, and his lungs are getting to be in pretty good shape after his bout with pneumonia.
Derek was off of the ventilator again for most of the day, which is the new regimen, to be off the vent during the daytime and then back on at night to rest. He’s doing really well in that regard.
Many periods of wakefulness today, coupled with a lot of body movement. Moving both of his legs a lot, and at times reaching with his hands. The nurse said he responded to commands like simultaneous right and left hand squeezes, and again he would open his mouth and stick out his tongue – for her. Not us yet. I guess he just knows that we’re pushovers, and nurses are not to be messed with – which is true.
We hope to have a quiet weekend, visiting and resting and doing research into rehab facilities and such. Very rainy here, which is nice, the plants are happy. Derek really likes rain, and they’ve had the blinds open in his room. He actually has a very lovely view of a courtyard with lots of plants and trees.
Our best to everyone, we hope you have a peaceful weekend too.
Oct 10 2005 7:50 PM (Swoopy)
Monday, as always, a busy day somehow. Derek was literally bouncing today, his typical leg bounce that all who know him have felt and seen, that restless leg. Just a lot of movement in general.
Since Saturday morning Derek has been off of the ventilator entirely, and breathes on his own. He has what is called a “T” piece attached to his trach tube that administers some oxygen, but he does all of the work. He’s doing really well, which means he won’t need a facility to wean him off of the respirator, he’s pretty much done that work on his own, in very good time.
He’s very into turning his head to look at people now, even though his bed still turns from side to side, he’ll turn his head to look over if you say his name. He almost always does respond to his name, and has begun (as of today) opening his mouth a little, as if he’s thinking he might say something but isn’t sure what it is. His amount of awake time is longer.
So they did schedule, and successfully put in place his new rigid trach tube this afternoon. It did turn out to be a bedside procedure that only took minutes. They also got a lot of good junk out of his esophagus when they pulled it out, and may, if necessary do a bronchoscopy tomorrow in case anything got loose when they did it. But he seems pretty comfortable with it.
The really good part about the new trach is now that it’s stable and in place (the old one was a very long tube, held in place with sutures), Derek could finally get out of bed.
The staff uses a hoyer lift that is a body sling of sorts, that has hydraulics to lift the patient out of the bed in a somewhat sitting position. He got to sit in a chair for two hours.
After awhile though, he was tired of sitting and started shifting around in the chair. The nurse at one point asked if he was ready to get back in bed, and Derek nodded yes. To confirm that he had in fact responded, she asked him again, and got the same response. That was a pretty cool moment.
It made for a great visit for Susan (the report is secondhand, as I was there this morning but couldn’t go this afternoon), and it’s really really good for his back and body to get out of the bed. It has, after all, been a month that he’s been in it.
Derek has now been evaluated by two rehab facilities, and tomorrow he should be evaluated by a third. That will be the evaluation we’re looking for, from The Shepherd Center in Atlanta. This place is rated number 17 in the country for rehab, and they have an excellent brain injury and coma stimulation program that is just what Derek needs.
Since he’s off of the respirator and on the cusp of being able to participate in therapy, as well as following some commands, it looks like he’ll be transferring to whichever facility suits his needs (and ours) the best, probably sometime this week.
This is the beginning of a new phase in Derek’s recovery, and the one that will probably prove for him and for us to be the most challenging. We got through the survival phase, onto the road toward stability, and now – heading towards rehabilitation. Every day brings a little improvement, and gives us something to look forward to, wondering what new thing Derek will be doing today.
More reports as they come. Thanks for sticking with us through this last month. We’ve got a lot way yet to go, but every day is a little brighter.
Oct 11 2005 940 PM (where Swoopy whines a lot) (Swoopy)
Boy, what a day it was. Someone mentioned to me that actually right now, Derek has it easier than we do. And today I believe them. Not every day, mind you, but today. Yeah. He got bathed, he got pampered, he got to watch a lot of TV. He got visited by people who love him and hold his hand and pet his head and tell him how awesome he is. Because he is.
We got to figure out what comes next. And that, my friends, is a special dance. It goes like this:
The doctors at the hospital say “he’s ready to move on”
We say, “okay where?”
The hospital case worker lines up facilities to come evaluate Derek.
They come, they say “yes we can, or here we are – what do you think, or nope sorry – no room, and he’s not ready.”
We listen. We ponder, we research, we tour. We call and ask questions. And more questions.
The insurance company says: “this is what we’ll do.”
We say, “are you sure? what we read in your policy says ___.”
The Insurance company says, “oh, we’ll check on that…and get back to you.”
And sometimes they do.
We check, we double check, we ask more questions, we call.
We talk to doctors again.
They’re confused too.
We talk to case worker after case worker at insurance, hospital and facilities.
Some caseworkers have the same first name, but work in different places, which of course is fun.
They say they’ll think about it, and talk to us tomorrow.
They say they don’t know, and they’ll check on it and call us back.
They say we can reach them at their pager or cell phone.
They aren’t as easy to reach as they think.
We’ll do more tomorrow, we’re tired from today.
And maybe tomorrow there will be the answers from today.
Then. we go visit the man in question.
Susan leans in and asks Derek “can I have a smooch?” Derek nods. Derek leans up a little, Derek puckers up.
Our day was all worth it.
We’ll figure out tomorrow, when it comes.
As the doctors can attest to Derek has made huge strides, even in this last week. He hasn’t SAID anything verbally yet. But with his eyes, and response to commands to squeeze hands, nod, smile, and lots of movement, he’s talking to us. He’s also awake a lot more than not. We’re thrilled about this part. Choosing what to do next IS – no matter what his insurance company or anyone else says – Our choice. They work for us. And we’ll get Derek the best care he can get, in the right place, for as long as he needs it. But getting there it IS a full time job. For even the most organized of people. Cause we are those people.
Make no mistake, next time Health Care reform is a matter of public debate, you can bet I’m weighing in. We’re having a tough time, but we’ll get through it. I can only imagine people who don’t have support of friends and family, or supportive human resources departments in their company to ask. Or people who aren’t well educated, and can’t communicate well, or people who don’t have good health insurance, or any health insurance for that matter. We actually have it pretty good.
It’s like anything else. You comparison shop, see what you can afford, find out what is the best option, and pick that one. We sort of thought we’d done that, and our best option – The Shepherd Center, said that Derek isn’t ready for them yet. And besides that, they don’t have a bed for him, and may not for awhile. So we’re on to plan B, which actually looks – to me – like a possibly better deal. More on that tomorrow when we find out more.
We have no less then about 20 people we have to talk to every day, to make sure things are going as they should, and that all of our bases are covered. Not to mention the many folders, for every facility, every bill, every insurance claim, every disability check, every everything. Copied, filed, mailed, faxed, paid for. In triplicate. In a pear tree.
I’m not whining, it just..blows my mind. Susan gets the brunt of the calls, because she’s the one who makes the decisions. I get most of the paperwork, and the leg work. Together, I think we could rule the world.
The up side? More improvement with Derek. And by all accounts, everyone, including Derek’s doctors, think he’s doing amazingly well. They have high hopes for him, and so do we.
He does still have a little congestion in his left lung, but a bronchoscopy today loosened a lot of that up. He had some productive coughing, though I have to admit watching someone stick a scope down your throat (trach) and inject saline solution into your lungs to make you cough, isn’t pleasant. But Derek handled it really well. I was there this morning when they decided to do it, and Dr. Akarino (pulmonary) encouraged me to stay. Back from his week away, the doctor said he was so encouraged by Derek after not having seen him for a week. He seemed really excited about his progress.
Derek’s blood pressure was really good this afternoon, and he’s got no fever at all. He’s ready to jump out of that bed, and start reciting poetry to us. I just know it. We’ll get there. And when he’s better, Susan and I are going to Hawaii. And we’re not answering the phone there, except to say yes to big drinks with little umbrellas in them. 🙂
More tomorrow, with less whining.
Oct 12 2005 9:40 PM (where it gets cool)
So yesterday. Wasn’t the best day ever, with a small exception.
We did, in the evening, get a new option for Derek’s rehabilitation. The facility located right at the hospital where he already is, invited us on recommendation of Derek’s doctor, to tour and speak with staff. We were under the impression early on, that Derek wouldn’t be ready for rehab at North Fulton until he was able to participate in three hours of rehab a day, and that he would need to be off of the respirator and more responsive to do so.
Upon further consideration it seemed that the rehab center was moving to bring more critical brain injury patients in to their facility as they were having excellent success in some of their therapies, using medications to stimulate the brain, and they felt Derek was an excellent candidate for their program.
We of course thought we were sure we knew from our research what we wanted, and in the end what we had thought, turned out not to be our best option. Wednesday would be about finding out what Derek’s doctors recommended we do, since Shepherd had no room for us, and also didn’t think Derek was ready for them.
The time that Dr. Harben took with us at the rehab facility at North Fulton to reassure us, and discuss what he would be able to do for Derek now and down the road, as well as the very communicative and friendly staff that would be working along with the doctors who had already been taking care of Derek, seemed like a really great option to us. We would be able, as immediate family, to visit as much as we wished to and would be encouraged to participate in his rehabilitation. We would be able to be there more because of the hospital’s close proximity to us, and we wouldn’t be starting from scratch with new facility, new staff, new everything. If Derek’s insurance would cover it, and his doctors agreed, we were all for it.
Today, although really long, I’d totally do all over again. A couple times.
This was a very cool day, and in the days to remember of Derek’s Recovery, this is one of the big ones.
I got in to the hospital as I do every morning, around 8 and Derek was awake already. And we do as we usually do, hold hands, watch the news. He’s been, more over the last couple of days, paying more attention and seeming more aware of what is going on around him. Today he was definitely more aware, and more awake. He already had a schedule and the nurse let me know that the plans were that Physical Therapy would be coming in to move his limbs around, see what he was able to do on his own and then get Derek back into the big recliner chair for awhile. The more he’s out of bed, the better off he is.
The physical therapist was impressed with Derek’s range of movement and that to some degree he could do some part of everything she asked of him. These were small things, but responding to commands nonetheless. Especially since he hadn’t been having very much PT yet, because of the trach situation. He could wiggle toes right and left, help the therapist lift his arm up, turn his head and such. The therapist, the nurse and I used the hoyer lift and got Derek into the chair, where he looked really glad to be upright. He also was able to let his legs dangle a bit and put his feet on the floor, again good to be in a new position. Once in the chair he shifted around some to get comfortable and seemed anxious to do something else.
Once in the chair we really started to talk about stuff. He seemed so very alert –
“Does it feel good to be sitting up?” He nodded his head definitely yes.
“Can I get you anything?” Pursed lips and furrowed brow as if thinking, opening his mouth as if he’d tell me if he could, but not quite there yet.
“How about if I bring a book and we can read.” Nod of yes.
“Better than TV?” Nod of yes.
“How about your iPod, would you like it?” Nod of yes.
“What music should I put on it?” Much thought, mouthing, but no definite answer.
“Susan and I have a plan to smuggle the dog into the hospital. Do you think we should?” Derek shook his head no and made a face.
“You don’t think so?” Again, he shook his head no.
“How about a picture of the dog?” Yes, and a smile.
All the while I would alternate asking him for either hand, making him lift it to give to me, and he would. A couple of times he reached up and scratched his nose.
After a bit, a woman I hadn’t met stuck her head in and asked if I would be there awhile. I said I would and she was excited, because she was from occupational therapy and had been watching and was very impressed with Derek’s performance. While he was awake and alert she wanted to evaluate him. And a few minutes later she came in to do just that.
Derek gave her his full attention, and participated while she asked him some very complicated and involved questions. Some of the big ones being:
“Do you understand what people say to you?” Nodding yes.
“Are things a little slow or fuzzy?” He thought about this one, furrowed his brow and really tried to tell her.
“You can hear the voice in your head saying what you want, but you can’t make the words yet?” Yes.
She too requested movement from him from his arms and legs, hands and feet. She asked me what his job was, I was explaining it to her and then I told Derek, “He’s a Suuuuuuper Geeeeeenius.” Oh my, the face he made. Exasperated, rolled his eyes, and grimaced, as if I was so silly.
The therapist was quite impressed. She went to write down this fantastic evaluation, as things progressed. I started talking to Derek more, about some of the same things we had been. From working hard with his arms and legs he had gotten a sweaty brow. He reached up to wipe it, and I offered him a washcloth. He took the cloth from me, and wiped his forehead. Not just casually, but took the time to get the cloth in his left hand just so, in very similar fashion to the way that a lot of people have probably seen him do in the past. He switched the cloth from hand to hand, depending on which one I was holding, and would, as he felt he needed to, wipe his eye or his brow. I pointed it out to the therapist who was sitting just outside the room and she was further amazed.
Derek’s nurse said that discussion was starting about getting Derek to rehab ASAP. I got up to call Susan on my cell phone, which is something we don’t usually do in the neuro ward. I stood a bit away from Derek and let Susan know what was going on, and while I was talking, noticed how intently Derek was looking at me. I put my cell phone in his hand, and he moved it right up to his ear. Though he didn’t vocalize, he worked very hard at mouthing things, and looking like he would say a lot, if he only could. All of this was noted, not only by therapy and neuro staff, but by Derek’s doctor who had been watching.
In fact Dr. Akarino came to the door of the room where Derek’s chair was, and started telling me that they were seeing about getting him over to rehab today. I mentioned I was talking to Susan, and he took my phone from me and they had a long discussion. I got the phone back and Susan told me that the doctors felt, that if it were there family the best choice to make now would be getting them into their rehab today. He didn’t need to go to a facility to concentrate on his breathing or anything else, he could participate in effective rehabilitation and should as soon as possible. We agreed, and Susan left work at lunchtime to come see how alert Derek was and so we could plan his transition.
At this point it was nearly noon, and Derek had been up and awake for hours, still alert. Susan came in time to see Derek wiping his brown again with the cloth, and they had a little time together. Then of course, he was tired and began to nap comfortably in the chair. We went for lunch, made some plans and while at lunch got confirmation from his insurance company that they approved his move to rehab and he would be moved in the afternoon.
Which is what happened. 🙂
And now we’re officially in rehab. Derek still has MRSA, which is a bacterial strain in his system, it’s being treated and will run it’s course, but it’s important to keep it from spreading. This means we’re wearing gloves and things as a precaution and he also has a private room which is very large and spacious.
We were greeted by a fantastic nurse who had a really good dialog with Derek, asking him things and getting good yes and no nodding responses. He held up his hand to wave when asked, knew the difference between the number of fingers held up when quizzed, and of course..stuck out his tongue for her, twice. He STILL wouldn’t do that for me this morning. I think he’s mocking me.
We brought clothes for him from home per their suggestions, because part of his routine will be getting dressed. The nurse stressed to him that there would be a lot of hard work, but that he could do it. He nodded in agreement that he was ready and tired of being in bed. He knows, at least some, of what he’s starting to do and he’s indicating that he’s ready to do it.
He slept a little in the evening hours, and sleeps more soundly that he’s not hooked up to every piece of equipment under the sun. He’s breathing some oxygen through the collar on his trach tube, and getting breathing treatments for his lungs. In the coming days they’ll begin to ween him off of the catheter, and off of the feeding tube, and eventually off of the trach which will help him with speech a lot.
He’ll be getting up and around, and his drug therapy is going to begin tomorrow morning bright and early. He’ll have speech therapy, physical therapy and occupational therapy. He proved today, staying awake most of the day and continuing to respond to each new person who asked for his bag of tricks, that he can hold up to three hours of therapy. He was sleeping very soundly by the time visiting hours were ending.
Derek’s parents are of course thrilled and making plans to come back to see Derek in his new and improved state. This is by no means the time to relax, it’s the beginning of the hard work. But our minds are definitely more at ease, and that makes a big difference.
Thanks for hanging in there for this long update, we were at the hospital ALLLLL day. We didn’t want to miss anything, and there was a lot to do. This was the first time Derek was awake when we initially tried to leave for home. We asked him if it was okay, and it wasn’t. So we stayed until he was sleeping, which wasn’t much longer.
Probably new and cool stuff coming up. Probably every day. 🙂 And if not right away, like I said, I’ll happily relive this one a few times. It was pretty great.
Oct 13 2005 11:50 PM (short one) (Swoopy)
Yesterday’s post was SO good…I’m not gonna post today.
Actually, I can’t really post today. I had so much work to catch up on, that I didn’t get to the hospital. It’s very weird. And I have guilt.
Susan had taken today off intentionally, and enjoyed having the whole day (and the freedom of visiting hours that aren’t restricted for immediate family) to sit with Derek. So that was good for her, and him too.
His behavior today was much like yesterday with the added note that he’s a little agitated. This is actually a good thing, it means he getting close to moving up on the scale for rehab assessment, from Rancho 3 to 4.
Rehabilitation centers may use a scale called the Rancho Levels. The eight level scale was developed by the professional staff of the Rancho Los Amigos Hospital in Downey, California to describe the stages of recovery after brain injury. What follows is a simplified explanation of each level of recovery. Remember, the patient never fits neatly into one level of the scale, but rather into a general area, exhibiting characteristics of several levels. Also be aware that individual patients progress through the levels at different speeds, some skipping levels, others “getting stuck” for a while.
The following is a brief description of the Rancho Los Amigos Scale of Cognitive Functioning:
LEVEL 1 – No response. The patient appears to be in a very deep sleep or coma and does not respond to voices, sounds, light, or touch.
LEVEL 2 – Generalized response. The patient moves around, but movement does not seem to have a purpose or consistency. Patients may open their eyes but do not seem to focus on anything in particular.
LEVEL 3 – Localized response. Patients begin to move their eyes and look at specific people and objects. They turn their heads in the direction of loud voice or noise. Patients at Level 3 may follow a simple command, such as “Squeeze my hand.”
LEVEL 4 – Confused and agitated. The patient is very confused and agitated about where he or she is and what is happening in the surroundings. At the slightest provocation, the patient may become very restless, aggressive, orverbally abusive. The patient may enter into incoherent conversation.
LEVEL 5 – Confused, inappropriate but not agitated. The patient is confused and does not make sense in conversations but may be able to follow simple directions. Stressful situations may provoke some upset, but agitation is no longer a major problem. Patients may experience some frustration as elements of memory return.
LEVEL 6 – Confused but appropriate. The patient?s speech makes sense, and he or she is able to do simple things such as getting dressed, eating, and teeth brushing. Although patients know how to perform a specific activity, they need help in discerning when to start and stop. Learning new things may also be difficult.
LEVEL 7 – Automatic, appropriate. Patients can perform all self-care activities and are usually coherent. They have difficulty remembering recent events and discussions. Rational judgments, calculations, and solving multi-step problems present difficulties, yet patients may not seem to realize this.
LEVEL 8 – Purposeful and appropriate. At this level, patients are independent and can process new information. They remember distant and recent events and can figure out complex and simple problems.
He’s more alert, and agitated and at times displaying what is described as inappropriate behavior. LIke, if it’s hot he doesn’t think he needs to wear his gown. And to those who know Derek, extra nudity really isn’t ALL that strange. 🙂
In any case, he had lots of therapy today and did begin drug therapy on a small scale. He’s being watched quite heavily as he now also wants to get rid of all the tubes that he’s now more aware of, and doesn’t like. Hopefully he’ll get weaned off of things like the catheter soon, and then it won’t be a problem any longer.
It’s like the cranky phase of a cold, you know that means you’re getting better. Derek is more aware of his situation, and so of course he’s more uncomfortable than before. This is when we’ll wish we had gotten more rest when he was sleeping too.
In any case, back to the hospital in the morning so Susan can save some more days off. So there will probably be a more detailed report tomorrow. Rest assured when we know a bit more about what to expect, we’ll start letting people know they can visit, because I know there are plenty of people who haven’t had the chance to yet, and are looking forward to it.
Thanks again for all the enthusiastic responses following our “breakthrough day” type post.
Oct 14 2005 10:30 PM (Swoopy)
Today, I was greeted this morning with Derek sitting up in a wheelchair, fully dressed in shorts and a t-shirt, shoes and socks. I think he’s lost about 35 pounds since he’s been in the hospital, and it really shows when he’s sitting up. He looked so..fantastic. I’m going to ask him soon, if he’ll let me take his picture, if he’d mind. He looks so great, and I know those who can’t visit and family who live far away, would love to see him.
He was very alert and had just had some occupational therapy. We “talked” for a bit (he nods, or mouths, or squeezes my hand or follows commands), and then I helped the nurses get him back in bed with the lift. He did, however, when he was having therapy (the therapist told me later) sit up on his bed with his feet on the floor, only partially assisted for a long while. He also helped get himself dressed. I would suspect they’ll let him get out of bed on his own, soon.
They’re really going to work to get him off of the catheter, and once he’s off of the respiratory system (that is oxygen and a therapeutic mist he inhales to help his lungs, he’ll be able to really move more and get out of the room too in the wheel chair, and we can take him outside. It’s been really nice here, very fall like, and I know he’ll enjoy the fresh air.
After he was situated in bed again he drifted off to sleep, because he had been working hard all morning. They wake patients early, and he begins his drug therapies early too so that they wear off by bedtime and he can fall asleep. More or less though, he was up all day.
Susan and I went back in the early evening, and he was wide awake, still dressed but still in bed, and he was wearing his glasses. He watched some Firefly on DVD with us, and after the episode was over it was time for Firefly to actually be on Sci Fi on TV. I gave Derek the remote and asked him if he knew which button turned the TV on. He did, and turned the TV on. Then I told him we wanted channel 72, he got the 7 but wasn’t fast enough with the 2. Still, really awesome.
He has some charts with Yes and No and pictures with words for common things he might want, or answers to common questions. The speech therapist is encouraging us to start using those with Derek as well as asking questions, so that he’ll begin to associate words and letters with the things he wants to say. We’ll be doing that more over the weekend.
I did however, ask Derek to mirror with his left hand, what I was doing with mine. Thumbs up, he matched me. First finger up, he did the same, two fingers, still with me. And then the change up…bunny foo foo. He smiled and followed suit.
At one point I was giving Susan a ribbing because she wanted to clean Derek’s glasses. This is something we’ve always gone round and round about. She can’t imagine how he sees through them when they have lint on the lenses, and he hates how she wipes them and then they just get smeary. So she took his glasses off and started wiping them on her shirt. He looked SO exasperated, so she took them into his little bathroom and I said…”oh…great, now she’s using toilet paper to wipe them.” Derek started to LAUGH, very hard. There wasn’t any noise, but the expression and how his body shook were exactly the same. Then we all laughed together.
The hard part of the evening now is when we’re tired and ready to go get some rest ourselves. We know he likes having us there, but we also can’t be there every minute. So not being there too much, is as important as visiting in a way. But now that he knows we’re there, and we’re pretty sure he knows most of what we’re saying and doing, when we tell him it’s time for us to go, he knows that too.
We asked him, if that was okay with him, that we were going home for dinner and we’d see him in the morning. He thought about it a minute and nodded yes. We asked if he was really sure, and he furrowed his brow and nodded more emphatically in a way that really seemed to say, “yes..it’s fine, really.” Susan got her goodnight kiss, which is still just as awesome as the first time. She asks for the kiss, he leans up and puckers up. It’s so cool.
Instead of going to the hospital wondering what might be wrong, or if there will be anything to see, we go excitedly unable to wait to see what new great things will be going on. He continues to amaze not only us, but everyone there. People who have been working on his case, like the respiratory therapists, since he first entered the hospital over a month ago, stop to tell us how impressed they are with how he’s doing. It’s almost hard to remember those really dark days when we weren’t even sure if he’d make it through the night. Now we know he will, and that he’ll see us in the morning, know we’re there, and smile.
It’s almost making me into a morning person. 🙂
Oct 16 2005 1:46 AM (Swoopy)
This weekend was great. So much happened, and we were there for most of it, more hospital than home. However when Derek is awake and participating, since he can’t be home, we bring home to him. Thankfully the staff is accommodating and doesn’t mind that we’re taking over. 🙂
Dressed and sitting way up in bed, but not out of it yet when we got there this morning. But physical therapy arrived soon after and we all agreed that Derek seemed to really have the urge to stand up on his own. On Saturday he was up in a chair for six or so hours before indicating he wanted to go back to his bed for a nap, but for a portion of the afternoon, he sat on the edge of the chair with both hands on the arm rests, as if he was going to try and stand. The nurses convinced him, because he wasn’t much listening to Susan and myself, that he really shouldn’t try yet.
Today though, we did try. Derek did well getting to the edge of the bed, and with me making sure he didn’t fall backwards, and a physical therapist on either arm, Derek stood up and we helped him pivot into the chair that was waiting. He did need to be hoyer lifted back to bed, because the chair sat lower than the bed and they couldn’t count on there being enough help when he was ready.
Derek sat in the chair and we did lots of ankle, knee and leg flexing exercises. He’s lost a lot of muscle mass in his arms and legs, which were once very thick, and now they’re quite narrow. Even so, he has more strength than expected. They say for every day that you spend in bed for an illness, it takes three to get back to where you were physically, when you got sick. Derek was in bed for thirty five days, so we know we’ve got some work to do.
Also, this weekend we gave Derek a computer to play with and pen and paper for the first time. There is some definite computer recognition, and he really likes moving his finger around the track pad, and purposefully opens and closes things. His fine motor skills are what I think he’s lacking in, as typing, like trying to write with a pen, is difficult. However, towards the end of today, while we were at lunch actually, Derek made some recognizable letters with the pen. I kept encouraging him to write larger, and the letters that we saw when we came back were much bigger. His approach to writing is more like drawing, trying to shape each letter with many strokes, and keeping the lines together is the hard part. This too, seems like it could progress quite well, as over only a little time over both days, he made marked improvement.
He does get very frustrated, as it seems there are lots of things he wants to do, and no doubt it’s true, but he just can’t figure it out or do it the way he wants to. Even simple things, like writing or recognizing letters of the alphabet. This is perfectly reasonable for someone who has a brain injury of this magnitude. In fact his progress so far has been phenomenal, and we’re expecting him to keep doing well.
Though it’s hard for us to watch him not being able to do everything he used to, we have to remember that it’s much harder for him, as he realizes his current limitations. I have no doubt though, that he has the tenacity to work through it, and get to where he wants to be.
So, more therapy this week, and we’ll keep you updated on milestones. Derek’s mom will be here tomorrow to spend a couple of days. Derek is excited about that, and so are we.
Oct 18 2005 12:06 AM (Swoopy)
Wow. How did it get to be Tuesday?
Today seemed like a week long, but it was probably because we, and more importantly Derek did SO much. I couldn’t probably even recount every cool thing, but we’ll hit the big big highlights.
Derek’s mom arrived yesterday afternoon, and he was SO elated to see her, it was written all over his face. He scooted up to the edge of the chair he was sitting in, and she was flabbergasted at his progress. The last time she saw him, only a couple of weeks ago, he was in neuro trauma, not awake very much, but able to squeeze her hand.
We stopped into neuro trauma on the way out of the hospital last night and saw Reggie, one of many fabulous nurses who took care of Derek in some of his first and darkest days there. We told him how awake Derek was now, and that he sits up, and had that day done his first bit of assisted standing. He was so amazed, and said he would look in.
Today we arrived just before Derek began his rehab, and as discussed the night before, his catheter had been removed. One less tube for him to worry about. I’m sure his bladder was thrilled, we certainly were. While we waited for his therapy to start I got out the clipboard with paper that we’ve been writing and playing games on, and Derek wrote his first legible word. His fine motor skills make it hard to manipulate the pen the way he wants to, but with practice he’s come really quickly in just a couple of days. His writing was just tiny dashes and dots on Saturday. Yesterday some very nice single letters in no particular order. Today, a word. I’m expecting a sentence tomorrow.
Conspiracy theorists and those who believe we are not alone, take note. Derek’s first word was Contact. 🙂
He then was O as I was X and beat me at tic tac toe. Then it was time for therapy We then so his mom got to watch him sit up in bed, move to sit on the edge of the bed and wash up with a washcloth before putting on his shirt. We stepped out for the pants part. 🙂 Then with the aid of a walker, and a bit of encouragement on the initial push up from the bed, Derek was standing…and stayed standing very tall for a good five minutes before sitting down in a controlled fashion. He nodded that it was good to be standing. For someone who has lost so very much muscle mass during his hospital stay, it’s amazing how well he moves.
He stood several more times, and while standing, brushed his teeth. He then used the board they have that works like a bridge to scoot from the bed into his wheelchair.
Shortly after therapy, the respiratory therapist who has been working with Derek’s trach from the beginning, through the difficult transition times, came to see what size the “weaning” trach should be. The new trach would close off, allowing Derek to try to start speaking, and lots of other things. And while he noted it, we talked about the fact that he really wasn’t sure it was necessary for Derek to really transition again.
Moving forward with Derek meant getting rid of the trach, and since his chest xray on Saturday was clear, and a lot of the medications he had been getting he wouldn’t be needing, and that he could continue breathing treatments with a simple face mask, it was his opinion it should just come out. I said we were ALL for that, because Derek was mouthing stuff so much and wanted to talk, and we weren’t looking forward to a whole new trach at this point.
A few minutes later he came back with another colleague who had been an important part of Derek’s respiratory therapy since his critical days, and said “we’re taking it out in a minute.” Whoa. Taking it out? Just like that? Yep. Consensus was from Dr. Akarino (respiratory doctor since neuro) and the rest of the pulmonary team, that out was best. Out was moving forward, toward talking and eating and drinking and normalcy.
His progression since last Thursday, his first real day in rehab, has been so amazing to everyone there, and especially us. That he could get out his catheter and his trach and be free of tubing and wires that tied him to his room for the first time, in one day was hard to fathom. But that’s just what happened.
No sooner could I say “boo” and it was done. Very easily, and Derek didn’t make a peep. And with a dressing over the hole, that is expected to close up very quickly and almost no blood, Derek no longer had the humidifier mask over his trach, or the tube. He had been pulling the mask off a lot yesterday, he was so sick of it. I was, of course, on the phone with Susan this whole time, who realized this one another important day, and she left work to come see, and hopefully hear Derek.
Free of his tubes, Derek was finally interested in the possibility of sitting in the wheelchair and moving himself in it, with small steps of his feet. Therapy had encouraged him to try it more, but with no where really to do, he hadn’t shown much interest. Today, was a different story.
He wore a paper mask (as we’re still under precautions for MRSA and wear gloves and such) and used little steps with his feet to move the wheelchair out of his room…and down the hall…past the nurses station…around the corner..and down the very long hallway. Where a nurse passed by us with a tray…that had Derek’s lunch on it. A wonderful member of the janitorial staff, who has been in Derek’s room nearly every day, and who I see every just about every morning, happened to be standing there watching him, amazed, again – everyone is. Most especially his mom, who was there for the whole thing.
And now, he could have lunch? Seriously? Now that his airway was clear, he was allowed food and drink as he wanted it and they would still supplement his diet with tube feeding to keep his calories up. Did he want to go have lunch? Yep, he pivoted the chair around with small steps and then we went right back down the long hall, past the nurses station and into his room. Where he promptly picked up a fork, and cut off a small bit of meatloaf and ate it. I freaked a little, and I went to make sure it really really was okay. And sure enough, it was. Derek fed himself, albiet with smaller bites, the same as he always has. And drank iced tea with a straw, all unassisted. Be still my heart.
Was there talking today? Actually yes. After his tube was out, Derek’s mom called Derek’s dad, where Derek responded some to questions. His voice isn’t at all loud, and we lean in close to hear him mostly. He’s clearing his throat, and it got somewhat louder as the day went on. Some responses and some words were right on target. Many were not. But he’s aware of it. He’s only hearing his voice for the first time outside of his head, in over a month. What his brain thinks and what comes out of his mouth isn’t always in sync, but again, as the day went on, that got better too. He’s still in the habit of nodding his yes and no, so we’re pushing him for vocal responses, and getting them most of the time.
Speech therapy can begin in earnest, and I suspect now that he’s free of the tubes, he can go to the gym for physical therapy and use the parallel bars to start working on walking. I suspect we’ll be in that wheelchair a lot less in a week. In fact when we went to lunch, Derek had sat up in bed, hoping to go to the bathroom on his own. He of course knew he couldn’t stand up, and now he’s under constant watch so that he doesn’t get up when no one is there. He seems to understand that he shouldn’t. But we all know that when Derek wants to do something, he can be pretty hard to stop.
And stop, is kind of what I have to do now, as today was ALL hospital, and tomorrow will be too, and so MY bed is calling me. I couldn’t be brief in this particular post, and even though I rambled on and on..I missed SO much. But there will be plenty more cool things to report in the coming days, and hopefully when I can get internet access in Derek’s room I can report more on the fly.
This was a really awesome day, and one of the best parts about it, was that his mom got to be there. She’s going home full of stories, and reassurance that her son is really really on the road to an amazing recovery. More tomorrow, I have no doubt. Maybe Derek will write the great American novel and run a marathon. It honestly wouldn’t shock me if he did.
Oct 21 2005 5:02 PM (Swoopy)
Wow..there goes the week. What we’re really looking forward to is tomorrow, we’re going to wheel Derek outside for the first time and we’re going to let him visit with the Remy dog. Thanks to Derek’s co-workers we got a huge poster of Remy that was printed on a large format ink jet printer. It almost feels like the dog is there all the time. We know that Remy is looking forward to seeing Derek, almost as much as Derek is looking forward to seeing him, and that will be great fun. Not to mention getting out of the hospital with the nice weather we’re having.
Derek got his trach tube out on Tuesday, and his catheter, so he’s now free of all wires. This means that his therapy for the rest of the week has been much more productive, and he’s been able to go down to the rehab gym for some of his physical therapy sessions. He’s been walking with a walker for the last three days while in therapy, and doing really well. He does tire easily but his strength is really improving every day.
He’s also been eating regular meals, mostly on his own. Things still obviously don’t taste quite right and some foods taste better to him than others, but also it seems that the foods he liked and didn’t like before, have remained the same. I wasn’t at the hospital when the food services person came to find out what to order for him for the rest of the day and the next morning. However, she came back later in the morning and said that he had communicated really well with her about what he wanted, and sure enough, the next day instead of eggs, which he doesn’t like, Derek had cereal that he does. He also ordered a tuna sandwich for dinner, and really enjoyed that too. This afternoon he had a hamburger and potatoes and chocolate cake, and he ate close to 80% of his entire meal. They now have him on what they call a “calorie count” where a form is filled out to tell them how much he’s eating, so they can compensate with tube feeding, but also as he eats more, they can back away from doing that. We’re hoping that the peg line that goes directly to his stomach will be able to come out before he goes home, because it’s the last tube he has on and he doesn’t like it much.
As I type this, I’m on the dial up connection in his room, and Derek is snoring loudly. He had another busy day, but he also had his first shower. After his afternoon therapy session he was able to stand up, with assistance and sit on the edge of his bed, scoot up and lay down on his own. This is another thing we are hoping to do more of, instead of using the lift. He positioned himself on his side, which is the way he prefers to sleep, and is curled up contentedly and snoring just the way he always does. I’m sure he’s enjoying being off of his back for a change.
He’s speaking more and more, but mostly when he’s very well rested and awake. You’ll be surprised, when you hear him, that he’s very soft spoken and that’s a pretty big change for Derek. His level of understanding us, is again, better when he’s well rested. He’s very sharp and alert in the morning, and as the day wears on, some of that tends to fade a little. It’s simply a matter of building up his stamina and that will definitely happen over time.
Every week Derek gets evaluated by the team of people who are treating him here, and we get a report. It’s the report basically though of what he was doing the week before, and by the time we get the report, it’s old news.
We have been somewhat overstaying our welcome here at the hospital, and generally a big part of that is the confusion over how much we’re supposed to be participating while we’re here in his basic care. Family members who help out, are more or less allowed to do as much as they can, and we’ve been doing an awful lot. This prompted some concern from us, that if we get too tired from doing all of this, what happens?
We also had some concerns about him getting enough actual therapy time because of all of the other things that he has to do, like get medications, and get baths, and eat which all take a lot of time – and then the actually resting that he needs because he gets so easily tired out. Our concerns were addressed immediately by both case management and the heads of the department, and they felt not only were they valid, but very good points that the whole team should hear. Susan and I have a meeting on Monday morning with all of the team members working with Derek, as well as his doctor to discuss how some of the medications that he is on to stimulate his brain, are doing.
If we’re doing all that other stuff, we’re not really spending quality time with him, which is really what our visits are supposed to be about. Do I mind the shaving and teeth brushing and everything else that a person who cannot do all of their own care needs? Not at all, but we’ll be doing that when he gets home, and this time while he’s in the hospital, we’re supposed to be learning about how to care for him and help him, not just doing it. This made for some very long and anxious days for both of us, and I haven’t been able to blog as much (easier now that I can do it from the hospital) simply because when I get home I need to eat, shower and sleep so that I can get up early and start all over again.
Susan has been getting up at the same time, going off to work all day and then coming to the hospital after. We stay with Derek through his dinner and more often than not, a few hours after that, he’s sleepy and we tuck him in to head home. Most of our days are fourteen or fifteen hours long, and finding time to fit anything else in there has been a challenge. I’m not whining, because watching Derek recover, and the strides he’s making, have been well worth it, and will continue to be. But I do feel some guilt over some of my other responsibilities that have had to slide some during this time. Thanks for understanding when I don’t return phone calls and email as fast as I should.
Derek got online for the first time this week and surfed a little, I started to play some of the most recent Skepticality for him, the one where Fraser Cain interviewed Tony Youens, but he interupted me and started talking about (as far as I could make out) how I didn’t need to do it all without him, and that it was okay. I in turn told him that it WAS okay and that things were fine with the show, and not to worry, and about Creative Loafing naming us the best local podcast in Atlanta. He said “very cool”. While he was looking at Skepticality.com he went right to the forums and went to post something. He had trouble typing his login, and after awhile lost interest, but he realized he wasn’t hitting the keys he should and kept correcting himself with the backspace key. Some tasks, as he struggles to complete them, put him into a frustrated loop, and then it’s usually best to move him on to doing something else.
As a whole – this week has been amazing. We are again, far ahead of where we were a week ago. I can’t wait to see where we’ll be next week at this time. I suspect, walking and standing a lot more. Being more independent in using the bathroom, and walking to and from places in the hospital more instead of always being wheeled there. One of the things physical therapy said he’d start working on next week, was navigating stairs. The have a very good set of practice stairs with railings in the rehab gym. They know he’ll need to work on that for when he comes home. Right now the target date for that has been determined to be November 14th.
Last Saturday Derek couldn’t write anything, today he was writing words and solving the turns on I make on the Rubik’s Cube. I’ve messed up a couple of the sides, so hopefully he can fix them, because I’m pretty sure I can’t. 🙂
More over the weekend, hopefully. But if not, you’ll know it’s simply a case of me being too tired itis. Derek will probably have plenty of energy, maybe he’ll start making the blog entries soon. It might take some work to decode them, but fun all the same.
Oct 24 2005 7:51 PM (Swoopy)
On Saturday morning Susan and I took Remy to see Derek. This was awesome, for everyone. Derek had been having his physical therapy and the end of it was wheeling the wheel chair outside. He then walked with the walker, the length of the sidewalk just outside the Rehab unit, (about 20 yards). There is a garden area that backs onto the parking that we have access to (via security card) with lots of grass, trees and a bench.
Derek got sat back down in his wheelchair and I brought Remy, who we call The Snoot, out from the car. As soon as we rounded the corner, Derek got a big smile and a surprised look on his face. He said very loudly “My Snoot!” Remy was pretty waggly too, and we put a pillow on Derek’s lap, and he held his dog for quite awhile. It was a great time, and one we’re planning to repeat about once a week.
Also, throughout the weekend, Derek’s awake time has slowly increased, as has his energy while he is awake. We also went from both of us really digging in to help Derek stand up and a walker to do a lot of leaning on, to Derek being able to stand up pretty much on his own and the walker is there because it has to be.
Also, late last week, if it was after four o’clock in the afternoon, Derek wouldn’t be able to stand up, he didn’t have enough energy left. Now, he can stand up just about any time we ask him to. It takes him a moment to catch his breath after he does it, but then he’s fine.
Aside from standing a lot, Derek is now walking, not just with a walker, but just holding hands with the physical therapist.
Today in fact, he did stairs for the first time. They have a small stairway that has two steps up to the middle and two steps down the other side, with railings on both sides of the stairs. Unassisted, Derek held on to the railings, but didn’t really lean on them at all, and went up and down the stairs, four times.
This is good preparation for going home, as we have so many stairs there. We suspect when that day comes, still as far as we know that will be November 14th, he will be able to come into the house through the garage up the smallest set of stairs we have (7) and will do a lot of his living on the bottom floor. This is perfect since the office with all the computers, the big screen TV, Derek’s bathroom with a walk-in shower, the laundry room and his closet are all on this floor. We’ll probably get or rent an adjustable bed to put in the living room for the time being, until he’s cleared to take that many stairs up. However, since on his first day he did nearly as many stairs as he would need to get up there, and he has a couple of weeks more to practice, that may not be necessary at all.
Derek’s voice has gotten louder too, and the percentage of conversation that is understandable, and applicable to the conversation has increased. Of the words he says, about 75% of them are words you can decipher. Of the things he spontaneously talks about, you can figure out about 50%. Of conversations that you have with him directly, and especially when asking Yes and No questions directly, it’s about 75%. Considering last weekend it was a whisper, and mostly gibberish, that’s a big improvement, and his speech therapists expect that improvement to continue.
Susan and I had a meeting this morning with all of the members of his team including physical therapy, speech therapy, occupational therapy, case management, head of nursing for the rehab unit and his doctor. We discussed some of the things that we felt needed improvement and we discussed the things that we appreciate most.
Derek can now take showers every other day, he just got out the access line for his IV medications that has been there nearly since he came to the hospital, and the feeding tube that goes to his stomach will likely come out in the next few days. He’s no longer using it, as he can take medications by mouth with water or in soft food and he’s eating a regular diet here at the hospital, which we supplement with some snacks to keep his blood sugar up when he doesn’t quite eat enough of the meal. He feeds himself almost entirely independent of us.
Days are pretty full of rehab, meals and personal hygiene type stuff. When he can get a nap in, we encourage it, so that he has more strength for the second half of his day. The more rest he gets, the better his cognition is at any given time.
Keeping that in mind, we’re also trying to give ourselves a little more away from hospital time, beginning this week. We’ve tried the patience of the staff long enough, and one of the things they continue to remind us is that we need to get rest too. When he comes home, though in many ways it will be easier, it will be a whole new set of challenges that we will be facing, and we need to be ready.
Thanks again too, for everything that everyone is doing to help us out. Don’t be too surprised if we start taking people up on the help they so generously offered in the early going. More updates too as we know when Derek will be coming home for sure, and about when it’s best for people who haven’t visited yet, to come see him. This will likely be weekdays after six, and weekends after two or three. This keeps visits from conflicting with his therapy time.
There haven’t been updates as frequently because now that Derek is so active, our “free” time is non existent. I can dial up an internet connection from his room, but again, I’m not sitting down frequently enough to make use of it right now. Soon though, I’m almost sure of it. Okay..probably not. But the reasons we’re busy, are good ones.
Nov 1 2005 1:39 PM (Swoopy)
Amazingly, as we were warned, the amount of time we have in a day has begun to diminish even more, instead of increase. Suuuuure, he’ll be in rehab and busy and we’ll have time to do stuff like..sleep. Silly people! That so did not happen. This is why the updates went from twice daily or more, to daily, to every few days…to weekly.
But no news, is good news, and that’s true. Derek is so busy, so alert, and so verbal these days that it takes all of our cumulative powers to get him to sleep at night. Also, with his cognition that he’s in the hospital, and we’re going home at night without him, he wants to come too, and asks us not to leave sometimes. Derek has never liked being by himself, so this is a normal reaction, and so we just make ourselves comfy at the hospital and make runs to Harry’s and Sonic (which are thankfully across the street) for meals and to bring Derek stuff when the food he’s getting from the hospital kitchen isn’t to his liking. On hand is a loaf of bread and a jar of peanut butter and a jar of jelly. When all else fails, half a peanut butter sandwich seems to help.
All of this is possible because the policy here in rehab, is that family can be here as much as they choose to be. This was one of the reasons too that we felt that a move to the Shepherd Center would be problematic, because they have strict visiting hours and we would only be there a couple of hours a day. While I can see the benefit in that, and that it’s probably one of the ways you can get a family to pace itself and not get too overtired or stressed, a lot of the time we’re spending here with Derek now, is providing him with stimulation, doing exercises and playing games. This increases his “therapy” time to double what it would be, or more, and the more we work out his body and his brain, coupled with proper meals and rest periods, and comfort and reassurance from us, the better his recovery will be – and that’s the most important thing to us right now.
So..enough about US! Derek is doing, as you may suspect, phenomenally well.
-The first weekend he was here he still had the trach and couldn’t talk, he could use a board to slide from bed into a wheelchair..with lots of help. He had a lift that put him in and out of bed.
– The second weekend, the trach was out, he was eating solid food and talking softly, but mostly words we couldn’t understand. He could stand up but with the help of two people,and not very many time a day. He was taking steps with his walker and his balance was improving.
– This past weekend, he’s eating, walking with only a hand of someone else to hold and he can stand up from any chair on his own. He’s doing his own grooming (shaving, teeth brushing, bathroom stuff), short of taking a shower, where he gets a little help. He’s talking a lot, and when asked direct questions his replies are 75% understandable.
The biggest thing is that he comprehends where he’s having difficulties, and will pause and try to either figure out the word he’s trying to say or let us know that he’s having trouble. He’s talked about his brain being “broken”, but with half a smile and a laugh. He takes it well because we continually reassure him, as do all of his therapists, doctors and nurses that he’s getting better every day.
The only tube he has left is the feeding tube in his stomach, which hasn’t been used for a couple of weeks. We’ve been advised that the tube has to remain in place for at least 60 days before it’s safe to remove it, and by our calculations that means it can come out this Friday.
Yesterday, Susan and I went to tour two different facilities that provide outpatient rehab care. Once Derek comes home, he’ll get on a schedule of going to a rehab day program where he’ll get more intense therapy, tailored to what he needs to work on to get himself back to functioning as close to his pre-stroke self as possible.
The North Fulton facility has the benefit of being nearby, and that there would be a continuation of communication between the therapists he had here in the hospital and those he’ll have as an outpatient. It’s a nice place, but it’s targeted for anyone who needs any sort of rehab. Derek’s physical strength and coordination are really coming along, what he needs a lot of is work on his memory, his perception and cognitive skills as well as continued speech therapy. All of this needs to be done with consideration for his brain injury, and that there are special factors that affect the way he learns things.
Thankfully, we also went to the Shepherd Center outpatient center called Pathways. We were so blown away. From the moment we showed up and saw all of the facilities, and heard about the kinds of programs they had, we were sold. Not to mention that brain injury rehab, is what they specialize in. They use computers as part of their therapy sessions, which was something we had been asking about and hadn’t seen used much in his therapy up to this point. Shepherd sets goals towards getting people back to work and functioning, and that means they work with a patient’s employer too, to find out what sort of skills they need work on. So computer use will play a big part in Derek’s rehab there.
Pathways also has a doctor on staff there that evaluates and monitors the medications the patients are taking, and they all know Derek’s doctor here at North Fulton quite well. They also have a psychological counseling department and will evaluate Derek on many levels so they know exactly what will work best for him, and monitor his responses.
The program at Pathways is a full day program, and patients take their lunch or prepare it in the kitchen there as part of their therapy. Rather than our being there all day, he’ll get dropped off there in the morning and picked up in the late afternoon, probably five days a week. We are encouraged to participate in his therapy, again as much as we want to, so some days we’ll be there too. But certainly not for the prolonged periods of time that we have been. The best part being..at night, he’s home..with us.
So, that’s the view from here. Sorry I haven’t been posting as frequently, honestly I began this post on Monday..and it took until Tuesday at noon for me to have time to finish it. Derek is down in the gym with Tracy, our favorite Physical Therapist who also thinks that Pathways is the best place for Derek to continue to improve, so I’m taking advantage of the time!
For people who want to visit, get in touch with myself through email or cell phone, or if you’re a Brown and Caldwell person, get in touch with Sean Kilpatrick for more information. We like to coordinate the visits so that people don’t come during his scheduled therapy time, and that we don’t get too many people all at once. Too much noise just causes confusion, and when there is too much going on, Derek tunes out a little and doesn’t participate. One on one or two is best, for now.
More updates in a day or so, I promise. 🙂
Nov 2 2005 2:36 PM (Swoopy)
And even as I was posting yesterday’s post….stuff changed. 🙂
Derek gets evaluated by his entire team every week, on Tuesday. Yesterday we found out that they have changed his discharge date, and not only that but we get to take Derek out of here both Saturday and Sunday for part of each day to see how he does at home. Needless to say, we’re excited. Derek’s new discharge date is Wednesday, November 9th.
This weekend we’ll be able to see what sorts of things we may need for him here in order to make his living environment easier for him, and safer.
Another big deal is that physical therapy cleared him to be free in his room, so we no longer have to put the soft restraint on him when we’re not here. This couldn’t have come at a better time, because last night was exceptionally difficult in that regard. Derek hated having the restraint on, and the excuse that it was because it was a rule, was wearing thin. He truly is strong enough to be that independent, and his cognitive skills have improved enough that he seems to know his limits, and how to go about doing small tasks that he wants to do.
This afternoon, he’s going to be evaluated by people from Shepherd pathways so they can confirm that he’s ready for their program. And that’s pretty much the story from here, but it was such good news that I didn’t want it to wait until the next free minute I had to make a post.
Nov 13 2005 2:46 PM (and news from the Road) (Swoopy)
It’s been far too long since anything new has been posted here, and hopefully everyone felt that “no news is good news”, because that’s certainly true.
However there IS plenty of news, and starting tomorrow I’ll be back on the case of letting everyone know what is going on with Derek, and those who are involved in his recovery.
First and most importantly, Derek was discharged from the hospital on November 9th, two months from the day that he was admitted. He began his outpatient rehab program with Shepherd Pathways the following day, and we’re very excited about what we think this program will be able to do for him.
Because it is a full day, five day a week program, he’ll be a pretty busy guy, working hard on the process of retraining his brain for the fabulous, fulfilling, active, important life he has ahead of him. It’s a very exciting time.
On a lighter note, it’s an exciting time for Skepticality, as I am just about to leave Ontario California where I have spent the weekend at the Portable Media Expo. I have a million amazing stories to share, and even more very important memories that I will cherish forever. The power of people, is what the tagline should have been for this conference, because when humans come together, amazing things happen, and I was really proud to be apart of it, and to tell people about Derek – because his name was on everyone’s lips all weekend.
So, I just stopped at a kiosk to print a boarding pass, and I couldn’t refrain because I knew it had been far too long since I had posted. I spent the weekend completely unwired, and in a way it was good, but it really renewed my need to be back in the fold, doing the things that are important now. I met a bunch of Skepticality listeners! Much more about that later. Skepticality really made a mark this weekend, and it’s a testament to our listeners and friends and people who I consider now to me as close as family, that you have stuck with us even though we’ve faded some in the past couple of months.
That time is over though.
It’s a new day for Derek, and in a way I really feel like it’s a new day for me too, and I can’t wait for it to really start- tomorrow when I’m back at home.
More soon –
Nov 15 2005 3:58 PM (Swoopy)
I am NOW in the position to post again on a regular basis. 🙂
Derek has been going to oupatient rehab since Thursday. I was at the Portable Media Expo in Ontario California from very early Thursday until very early Monday. Monday morning began my new routine. I Susan and I help Derek get up, and then Susan goes to work and I make sure the man gets up, dressed, fed breakfast and has his pills. Then we’re out the door all the way downtown. The commute is an hour, with good traffic, each way.
Because of this, I decided that it makes more sense once I get down there, to stay, because I would waste two hours of day driving back home and then back downtown again and the time in between is fairly short.
Thankfully there is a Borders and a Starbucks in the area, and they have outlets and wireless hotspots. So here I sit, staring at the ugliest Christmas wreath in creation on the side of Dick’s sporting goods, corner of Peachtree and Wieucca in Buckhead.
But enough about that – I have no complaints, it’s going to be nice to have that much time to get work done in an environment where I really can’t do much else.
Welcome to what I’ll call Phase 3 of Derek’s Recovery.
Phase 1 – Survival
Phase 2 – In Patient Rehab
Phase 3 – Home/Outpatient Rehab
Phase 3 so far is my favorite. But it’s just another new way that we’re living our lives. Derek being home means that we’re not at the hospital all the time, but still not home much. Shepard Pathways is an awesome place. Monday, Susan and I both went to therapy with Derek for the full day so that I could meet all of his therapists and find out what the routine there is like. Family is encouraged to participate in therapy to a degree, but part of being outpatient is working towards independence. It’s easier for Derek when we’re there, as we’re more attuned to his needs and when his speech isn’t clear, we’ve come to speak the language and can easily translate. That’s nice for us..comfortable..for us. But it isn’t moving Derek towards being forced to communicate on his own, and function on his own. This is also the only time of day now, when one of us isn’t with him.
He’s much better, physically, so much so, that the therapists have mostly turned his physical therapy time at Shepherd into workouts. He’s been pedaling on a recumbent bike for 20 minutes, and then he does some strength training. The rest of the time, since they have evaluated him in the few days he’s been there, will be mostly devoted to speech therapy, because it’s his biggest need.
AND – most of the staff at Shepherd Pathways that are dealing with Derek, including his Case manager, have been checking out Skepticality. This provides them with rare insight into the speech and personality of one of their patients, which hopefully serves them as a tool that will be a big help.
Derek is still required to be supervised 24/7. While it’s hard to think that it’s necessary, you only have to witness him deciding that he’s going to go downstairs by himself after just being told to stay where he is, to realize the extent of his short term memory issues. Yes, they are improving, but oftentimes if Derek is idle and not involved in a task, boredom gives him the tendency to wander. We’ve put signs on the doors of rooms leading to stairways in the house, reminding him not to go out without one of us.
This is a mild deterrent. He does really well on the stairs, but if he went up and down them frequently and at will, he’s not only at risk to fall, but he’ll get too tired to get up to bed by the end of the day. Constant supervision changes everything. Everything we do, includes him. And we’re just thankful that it does.
Last night we went to dinner after Derek was done at Shepherd, and that was the first restaurant meal he’s had since he’s been out of the hospital. He was able to order, and in fact his eyes were bigger than his stomach, and ordered as he typically would, but couldn’t really finish it all. Eating moderate meals, three times a day, plus all of the energy that it takes for him to continue to heal, and the physical work that he’s doing and getting plenty of sleep has produced a Derek that is about 65 pounds lighter, by our estimation.
Tomorrow he has an appointment with Dr. Turkel, his cardiologist who is monitoring his blood pressure. Since insurance pays for therapy by the full day, that means that Derek gets no therapy on days when he goes to the doctor. Since we had to call four doctors for appointments following Derek’s hospital discharge, I hope that doesn’t mean he’ll be missing therapy very often. Every day of his therapy contributes to his improvement, and it’s a little more visible every day. He needs to be there, as much as possible.
We just found out that Dr. Weaver, our beloved neurologist is not “in network”, so we have to investigate what we can do about that, if we can afford to pay the out of pocket expense that would be involved in having the doctor that saved Derek’s life, continue to be his doctor. We feel pretty strongly that he should be, even though our other options did work on Derek’s case when they were the doctor “on-call”, they weren’t as involved as we think is needed for his long term care.
So..I can blog now, every day 🙂 When I’m home, if Derek is home – I am, where he is, for the most part. This means I’m going to urge him to spend some of that time online, which is good for him too. So if you read anything by Derek, or he shows up on Messenger, or Skype, chances are it’s really him. 🙂
Thanks to everyone who was at the Portable Media Expo who approached me. I can quote the beginning of nearly every conversation I had there with friends and strangers alike, and there were a hundred I’m sure, “I’m so glad you’re here! How’s Derek?” And then usually, depending on the person, there were some tears. Thankful tears, mostly, for the wonderful outreach from so many people, to offer us help and comfort and concern, when we really needed it. There aren’t enough hugs in the world to thank everyone.
So, that’s it for today from Borders at Buckhead Triangle. I may have to start using the portable equipment and podcasting from here every day 🙂 I could take informal polls of people I see standing in the Science section.
Nov 20 2005 7:02 PM (Swoopy)
The week just flew by!
We’ve developed a good schedule, where Derek gets up around seven, goes down and has breakfast, gets dressed and we’re out the door on our way to Pathways by 7:45. Sounds simple I guess. What it really means is, I wake him up, help him downstairs, make him breakfast, make his lunch while he eats it. Afterwards, help him down to the bottom floor, assist him through brushing teeth, washing up and all that stuff. Help him dress, make sure we have everything and then we head on out to the car. Somewhere in there, I find time to get ready too. Susan has usually just left when we’re getting up, so everyone’s day is starting earlier than before. Derek gets up pretty well, probably better than I do, so I can’t complain.
Traffic is fun. I like commuting. This is my new mantra.
Since Traffic is so much fun, and it takes an hour to get to Pathways and it would take another hour to go home, and then another hour to come back, and then another hour home – whew – I decided that it saves time, and gas and frustration for me to just hang out downtown while Derek is at Shepherd. I’ve found some places with wi-fi (t-mobile hot spots) and I try (and will be trying harder) to get work done, or I can go to a nearby grocery store or Target and get errands done and all that stuff. I head back to Pathways and we leave there around four and get home around the same time as Susan, if we’re lucky. And then it’s dinner and then it’s winding down time, and then the day is just gone, and we’re all sleepy.
The first few days at Pathways, Susan was there and Monday we both went and spent the whole day. While it’s tempting to want to be there and to participate, our not being there is also helping him foster a sense of independence and allows the therapists to really see how he responds without the coaching or distraction of others. And this is all really good for him. There is always a twinge of anxiety in the morning about if he’ll be okay all day, and of course he is. He doesn’t have any resistance to going, or being there without us either, so there is nothing to feel guilty about. Still, it’s always good to see him at the end of the day to be assured that everything was okay.
Derek has been doing all sorts of new things to challenge him at Shepherd, and the results are already showing. His physical therapy is more of a work out now, as he spends twenty minutes on a recumbent bike and does resistance excersizes to build his endurance. Physically he’s doing great.
Cognitively, he’s also making great strides. One of the biggest differences in him right now, from the Derek that everyone knows and loves is in what therapists refer to as initiative. He responds very well to requests and questions, and is content to do almost anything. He goes with the flow, in a way that he’s never really done before. This is because the desire to want to do any particular thing, and this includes what he wants to eat also to a degree, isn’t very present yet. It is, like everything, improving but as for having an urge to go and do something, read something, watch something, be somewhere, that just isn’t a factor in our day to day.
This means he’s not spending time in front of the computer, or watching television or reading or playing games, unless we suggest it. So we do our best to keep him actively doing something during his unscheduled time. We play games, lots of card games and memory games and word games, and we talk about various things and watch television shows that he likes.
On the language front, a lot of the rest of his therapy has been redirected to working on his speech as it is the main thing he really needs. His therapists are targeting his apraxia and a lot of the things they are doing to help him distinguish when his words are not the ones he means to say, and how to read more slowly and sound out what isn’t coming out right. This gets better nearly every day. He does get frustrated at himself that he can’t just say what he wants whenever he wants. You know Derek, talking is his favorite thing, but that he works through it and his spirits are still high is a testament to just how much more patient he seems to be these days. This is part of that initiation response that is slowly returning, but that keeps him from wanting to flit from one project to the next. So in speech, this newfound resolve is a benefit.
His handwriting is just about as good as it ever was (being a lefty) and he reads very well also. His reading comprehension has been tested, and showed that it’s quite good and will improve as his short term memory does. This too, is getting better. Part of the day is quizzing him on what we’ve already done that day, what we did earlier in the week, plans we have made for the immediate future and even what we just did a few minutes ago. This is something that is better when he’s more awake or if it’s earlier in the day, but his stamina too is increasing and he can stay up fairly late and still have enough energy to climb stairs in the house or carry on active conversation. This is a big improvement from a few weeks ago when he was very hard to keep awake, and his speech would deteriorate quite a lot after dinnertime.
The hardest thing for me to keep in perspective these days..is time. Today is November 20th. Derek went into the hospital on September 8th. 72 days later… It feels like a year. In terms of time, from near death, to some consciousness in bed, to in patient rehab on oxygen and not walking or talking, to walking and talking out of the Hospital on November 9th – to being able to function at home and go to dinner at a restaurant for a fairly normal dinner – is astounding. Yay science. Yay human perseverance. Yay him, yay us. Yay everyone.
So this week, even though this is a holiday I’m not usually into, I’m going to be thankful for the power of human potential and for everything that we’ve learned this year, and for our strength and patience and the love and support of family and friends near and far that allowed us to survive this and dare I say, eventually to even thrive in spite of this.
Nov 30 2005 7:40 PM (Post by Derek)
Wanted to thank you to everyone now that I am moving around and am up and typing better, and well into my re-hab work. I have been having catching up to do!
I have appreciated everyones words and taking an interest how am I doing. It is amazing how great people are at times like this! I have no words how much I appreciate all my listeners and keep listening I don’t have any plans on quitting soon! 🙂
Dec 05 2005 10:00 AM (Swoopy)
Wow, it’s been too quiet over here. But when life starts to assume some sense of normalcy and panic and worry subsides, the urge to post on every little thing doesn’t seem as pressing.
We’re also in a pattern, somewhat, of “lather, rinse, repeat” days which I suspect some people wouldn’t find entirely interesting. And yet, just knowing that things are fine, is important too. So here I am to report a little of what a typical day has been like over the past month.
Derek was discharged from North Fulton in-patient rehab on November 9th. It’s only been about a month, but it seems like much longer. And only three months since Derek had his bleed. But again, remembering that it’s only been about 30 days since he’s been home is another surprising indication of how much Derek is still progressing.
When he first came home, he could manage all the stairs in the house (and there are many) about once a day, and do one flight from the family room to get to the kitchen or from kitchen up a flight to the bedroom then again maybe twice more. At the end of the day on going up to bed, he would sometimes need to take long pauses between steps and really hold the handrail and support himself on the stairwell wall to make those last few stairs. There was a lot of grunting and groaning involved too from sore muscles.
He was under strict orders not to move from one floor of the house to another, which of course he did from time to time anyway. Thankfully we’ve only had one fall, and it was a couple of days after he first came home, and wasn’t at all serious. Derek has always regularly stumbled on the stairs anyway, so that isn’t anything new. Something about big feet and small stair treads.
These days, though he’s a little slower in the evening, Derek goes up and down the stairs as much as he feels like it, and since he likes to be wherever anyone else happens to be (this is also not new behavior), this means he’s up and down a lot. He doesn’t use the handrail for support really, just more of a guide and sometimes not at all (though we encourage it).
When we left the hospital we received paperwork for a temporary handicapped parking tag so that when we went places, we could park closer to entrances. We haven’t gotten to the DMV to get it, and thus far, he’s been fine walking wherever we go. The time we spend in stores walking around is limited, but is usually more than long enough to do whatever errand we go to do. He went with us on Saturday to Sam’s Club to get a couple of things, and to go there on a weekend day during the holiday season is no small feat.
His therapy at Shepherd Center is going extremely well. We have a family meeting scheduled for this afternoon in which all of his therapists and his case manager will be present, to give us an update on his progress from their point of view. All of the feedback we’ve been getting has been excellent thus far, and the results, especially of his speech therapy are really evident.
Part of his therapy includes going out to stores and going places for lunch, budgeting funds, buying things, calculating change and staying focused on the task at hand. The biggest challenge for Derek on that front, is the last part. Occasionally he thinks he needs to do something, or find someone, and instead of waiting for them, he’ll go in search of whomever he’s looking for. The instinct to do stuff is good, but he doesn’t always remember to follow directions, and so that’s the part that needs work. This is part of his short-term memory issue, which is again greatly improved. When he came home from the hospital Derek couldn’t remember what he just said or did, or what someone else said to him or asked him to do, in a five minute time span.
These days, though he needs to be reminded sometimes, he does remember things that were talked about minutes ago, hours ago, days ago, a week ago. He can recall what he did during his day, and elaborate on it. He can remember things he was asked to do by someone else, and remind us about them. These are all things that he works on in his Life Skills therapy classes.
In his physical therapy, Derek is basically now taking part in an exercise regimen that involves 20-30 minutes at a time working on the recumbent bike and on the treadmill. He says that the therapists tell him that they’re going to make him sweat, and having picked him up from class right after his physical therapy, I can tell you that they do. It’s really increasing his stamina, and keeping his weight down too.
The biggest challenge on the physical front is that the medications Derek is taking to combat his blood pressure have side effects that involve dizziness and drowsiness. The dizziness isn’t usually a factor, but the drowsiness definitely is. We’re going to be discussing what we might be able to change with his medications, that will alleviate the problem at least a little. We have a blood pressure monitor and we take his pressures morning and evening, before and after medications too. So far, his numbers have been excellent, often at times better than mine and Susan’s. We’ve actually discovered that Susan is more than a little hypertensive herself, and she will be talking to her doctor about that soon.
The biggest component of Derek’s therapy is for his speech. The therapists recognized early on that it was the area where he needed the most work, and have stacked up extra speech therapy slots in his day for just that reason. Derek comes home with flash cards with more and more challenging multi-syllabic words to work on, and with practice, he masters each one. Cognitively he’s probably about 85%, but his speech is about 75% and that frustrates him. He knows what he wants to say, and tries to say it at the rate he feels he should be able to. Almost always, when words come out mangled or incorrectly pronounced, if he takes a moment and repeats himself more slowly and succinctly, he does just fine. Derek doesn’t do anything slowly, and so that’s a tendency that he’s working to overcome. He speaks of his own accord, and contributes to conversations and comments on stuff we’re watching or doing, in the same manner he always has done. More of skeptical Derek is rearing it’s head every day, especially when we’re watching the news.
My days of slacking off, hanging out downtown at Borders, drinking coffee and using the wi-fi, have become infrequent due to the very cool carpooling arrangement that began last week. Co-workers of Derek’s have been picking him up from the house in the morning and taking him to a drop off point where Derek is picked up by Shepherd Pathways transportation, and they take him the rest of the way downtown to begin his day. The drop-off point is right around the corner from Derek’s office, so it’s fairly convenient for those co-workers who already live near us.
Friends have been offering for awhile and we finally felt that it was time to start taking them up on it. I still go in to the center to pick Derek up in the afternoon, and that allows us to keep in touch with goings on at the Center and Derek gets home earlier than he would if he took the shuttle home. It’s been great to have mornings and early afternoons to run errands and get things done that need doing around the house. So big thanks go out to Sean and Pat and Scott and Dan, and the rest of the transportation team; it’s a big help.
And, lastly, Derek has finally started spending more time at the computer of his own volition. All of the well wishes that were sent when he was in the hospital are all cataloged in a folder, and he’s slowly working his way through them. He has been online messaging with friends and doing some forum posting and emailing of his own. Being on the mic, is just around the corner.
So we’re getting ready for a low-key holiday season. Derek’s parents will be here of course, and we’re all looking forward to that. As far as gifts go, we already got the best present we could get, and it’s a gift that keeps on giving.
[answer to a posted question]
Speaking just for myself, I’d say he is now very aware of what he’s been through, though that has taken some time to come to, simply because giving him all of that information too early and too quickly would have been counter productive to his getting well.
He’s aware of the differences in his day to day self and the challenges they pose, and that’s good. He knows what he needs to work on and he’s very aware through talking with his therapists and seeing friends who haven’t seen him since he was in the hospital, how much better he is doing.
But also he’s aware through reading the accounts of it, and from what people tell him and also little bits that he does remember, how far he’s come already.
His sense of self is in tact. His personality is there too, though albeit a little mellower. He’s also more sensitive in some ways, and surprisingly MORE patient than before. Which is excellent. Now he’s the one that tells me to calm down when I’m yelling at cars in traffic and he used to get road range at the snap of a finger. It’s pretty funny. In some ways, he’s more like I typically am and I’m more like he used to be.
As for the other stuff: he likes Honey Nut Cheerios, and eats them just about every morning. He squishes, and then I go back and roll up the tube neatly – because it drives me crazy, and he wears..both, but not at the same time.
I highly suspect when he comes home this afternoon and scans the forums, he’ll weigh in on this one himself. About the comprehension factor that is, not the boxer-briefs thing. 🙂
Dec 24 2005 3:21 PM (Swoopy)
Just a quick holiday hello from our family to yours.
As we mentioned, we were all looking forward to Derek’s parents coming to Atlanta to visit us all for the holidays.
Unexpectedly, Derek’s father suffered a heart attack a week ago and underwent emergency surgery. Fortunately he is doing extremely well, and his hospital stay was brief, but this made it impossible for Rich and Bobbi to travel for the holidays. This was of course a huge disappointment for Derek, as he was worried about his Dad and had been looking forward to seeing him, more than anything.
With Derek doing so well these days, and since Christmas falls on a weekend this year, we decided that we would make the trek to New Jersey so we could all be together for the holidays after all.
We left Atlanta after Derek’s day of rehab on Thursday and arrived around 8 in the morning on Friday. We were greatful for the lack of traffic (after leaving Atlanta at rush hour of course) and good weather for the entire drive. Susan stayed awake for a marathon amount of time and shouldered most of the driving, I made sure we were navigating properly, kept up on the snacks and entertainment portion and Derek rested quietly in the back, napping on and off.
Big thanks go out to our friends Rich and Cassie for watching the Remy dog on this busy holiday weekend. It means a lot that they of course didn’t think twice about saying yes, and even offered to help with plane fare so we wouldn’t have to drive. But of course we drove because Derek isn’t cleared for air travel yet.
Everyone is really enjoying seeing Derek, and are of course amazed that a guy who was loitering on death’s doorstep only a few months ago, and even a month ago had very limited speech, is now walking around and having long conversations as if nothing happened.
On the rehab front, this coming week will be Derek’s last week of full time rehab at Shepherd Center Pathways. We’ll be having a meeting towards the end of the week to discuss his part time rehab schedule, and how that will integrate with his reintroduction, slowly, back into his office environment. His co-workers have been amazing, helping drive Derek to the morning bus service that Shepherd offers for patients that live farther away, and they have been talking about the goings on at his office and bringing him back up to speed there. I think he’s excited about getting to this point, because he is more than ready to begin resuming a more normal way of living. This of course, is all happening at the speed of light. Derek is far ahead of the curve in regards to his improvement, and to still be undergoing lots of therapy even a year from now, isn’t at all unusual. So that he’s already moving away from rigorous therapy and back into regular life, speaks volumes about how well he’s really doing.
We’ll be returning home on Monday, likely with a throng of others, and back to work and rehab on Tuesday. It is a happy holiday for all of us, just to be able to have Derek with us. To have him living and functioning on any level would have been wonderful, but to have him operating well above that, and being his old self is something I don’t think any of us imagined would be happening so soon. It’s the best present any of us will ever have.
Our best goes out to everyone. We hope that your holidays are happy, and that you and all of your loved ones are safe, warm and as near to you as they can be.
The Colanduno Family
Jun 10 2007 7:20 PM (Post by Derek)
Derek is here… waiting for Swoopy to get done with her amazing dinner here on this fine Sunday night. Mmmm… Swoopyburgers, Corn, Mushrooms, and Sweet Potato!
Oct 21 2007 9:43 PM (Post by Derek)
Got up… ate breakfast… we all watched a small bit of Television before starting our day. I took a shower, then when I got out the dogs were going nuts… so I got dressed and took them for a walk around the neighborhood for about 30-40 minutes. Of course, i was all sweaty and such… so I took another shower.
On my way out of the shower and getting dry… at some point… I sat down on the closed toilet lid and next thing I know… I am waking up with Swoopy and my wife attempting to wake me up… I couldn’t see… I was confused… when I finally started to see again the Ambulance came to get me… and back to the hospital I went.
We spent from about 10:30am – 5:30pm in the hospital as they poked me, put me through the CT and MRI machines, etc, etc… all just to make sure nothing had happened again. They wouldn’t let us leave until they pumped in a full bag of IV fluids into me… all of my scans were clean, all my tests were fine.
They freaked out a bit at my heart scan when they first got to our house due to an abnormal heart rhythm, which ended up being nothing in the end. It was most likely my heart murmur which I have had since birth.
But, due to my past and such, they wouldn’t let anything go without a test and a sign off from a specialist.
So, there it is… just when I think I am getting back to ‘normal’ my body reminds me that I am still wee and fragile! 🙁
Oct 22 2007 12:43 PM (Post by Derek)
Today nothing real strange… my blood pressure did some funky stuff in the morning… but seems to have settled back down. I am sure it was my genetic Heart murmur I have had my whole life that really is what caused the EMT’s to freak out…
( And so far, that is the end of the scary part of the ‘stroke journey’ )