Thursday, December 31, 2009

Thursday, December 31

Happy New Year! I don't know about anyone else, but I am looking forward to 2010. Great things are coming Bill's way. Today went very well. His goal time in the wheel chair was 4.5 hours but because of his therapy schedule and a stern talking-to, he sat in the chair for a little more than six hours. Yay Bill! He also got a portable
ventilator today so he was able to leave his room and do some of his physical therapy in the gym. I did not get much of a chance to ask him what he thought of that because he was exhausted by the late afternoon. He should sleep very well tonight!

Wednesday, December 30, 2009

Tuesday, December 29, 2009

Tuesday, December 29

The big news for today is that Bill not only got out of bed, but actually got dressed!  I would imagine that after 6 weeks of wearing hospital gowns, pants and a t-shirt would feel pretty good.  He had physical, occupational, and speech therapy today.  He is still on the pre-rehab list until he is able to tolerate at least three hours of therapy on consecutive days.  Judging from his schedule, he should be at full rehab status by next week.

I would like to take this opporunity to thank Diane Zimmerman at AEP.  I hear that today there was a benefit lunch at the plant for Bill.  Thanks to Diane and everyone else for all the drives to Morgantown, donations, and support Bill and the rest of our family has received.  It means so much to us all.

Monday, December 28, 2009

Monday, December 28

Big news here- Bill was finally moved out of the ICU and onto the rehab floor!  Yay!  He's still not quite up for a full schedule of rehab, but he will be seen by all the therapists for shorter durations until he is stronger.  He still has a lot of secretions in his lungs but his cough is getting stronger which is a very good thing.  I don't know if there is much of a schedule for vent weaning.  I have heard that the Shepherd Center is aggressive when it comes to ventilator weaning, but it all really comes down to how a patient responds.  So, hopefully it will be soon but I just don't know.

The other big news today came from the speech therapist.  She gave Bill fruit cocktail to eat and he was able to chew and swallow very well.  These means he can be moved to a "Level 2 diet" which requires chewing.  He's been on regular foods for several days now, but they've all been pureed.  The spaghetti and meatballs he had for lunch were just plain weird.  Anyway, he really wants to chew his food so this was big news.  Hopefully tomorrow the new diet will start.  He is receiving about half of his nutrition through tube feeds at night and half as meals during the day.  I've been supplementing with milkshakes, jello, and Pepsi.  Hopefully he will start gaining weight in the near future!

Sunday, December 27

We had a fairly quiet weekend in Atlanta.  The hospital was running on a skeleton crew so there weren't really any therapists popping in to make Bill work.  He continues to sit in the chair and is doing it not only willingly, but diligently.  He is supposed to increase his time in the chair by 30 minutes each day.  Everyone says more would be great, but he is sticking with the 30 minute guideline.  Yesterday his nurse came by to help get him back in bed about 20 minutes before the end of his goal time (which was 3 hours!) and he told her to come back when he had gone the whole time.

There was talk of moving him to a regular room on "the floor" last night and I think the impetus for that move was for Bill's psychological benefit.  He has been isolated in ICU rooms this whole time and that's tough.  I've been telling him about people I see in the Shepherd Center and I think he really needs some social contact.  Because of the danger of pressure sores, whenever Bill sits in the wheelchair he does a what is called  a weight shift every 15 minutes.  The whole chair tilts so his hips and knees remain bent at near-right angles, but he tilts back until his back is parallel to the floor.  This allows the blood to move around in his body.  Anyway, I told him that when I was eating Christmas dinner in the cafeteria last week I saw a patient eating with his family and they stopped the meal partway through to do a weight shift.  He has asked me about that a couple of times so I think that he is probably really yearning for something normal and to know that there are people like him doing normal things like eating with their families is encouraging.  To make a long story short, he did not actually transfer to a regular room last night after all.  He had a lot of secretions build up in his lungs yesterday and at the end of the day they decided to keep in him the ICU a little longer so that they can stay on top of suctioning out his bronchioles.  The secretions should subside at some point, but like everything else no one knows when.

I think that Bill's mood and attitude are better here.  I'm not sure how much of that can be attributed to different meds and how much of it is a shift in Bill himself.  He is a bit frightened by the idea of full-time rehab and I think he's worried about not being able to do much.  At the same time though I see him struggle to rise up above that fear, acknowledge it, and then tell me he wants to get going.  I know that this will be brutally hard work for him and that there will be bad days and setbacks but I am hopeful that he can keep his chin up and not give up.  Yesterday morning when I went into his room he told me to lift his left arm out from under the blanket and then he showed me that he can rotate his forearm in both directions.  He said that he just regained that ability the night before and he was visibly excited by it.

Friday, December 25, 2009

Friday, December 25

Merry Christmas!  I hope everyone is enjoying the holiday.  We had a great day in Atlanta.  Bill got a solid eight hours of sleep last night (first time in a long time for that!) and anyone who knows Bill will understand what a good thing that is!  His appetite has returned and he ate all three meals today.  He also got a shave and his hair washed (first time for that since the accident.)  He spent two hours sitting upright in his wheelchair and is starting to design a better chair.  He hasn't actually gone anywhere in his chair yet, so I'm not sure why this one is inadequate.  He said something about four-wheel drive though and I have two words for anyone out there who is scheming along with him: roll bars.

He is ready to stay in touch with folks so I've set up a Gmail account for him (he no longer has access to his AEP email.)  Drop him a line:
a.william.beckATgmailDOTcom
Keep in mind that I will read your message to him and type his response, so don't say anything you don't me reading aloud!

Thursday, December 24, 2009

Thursday, December 24

Merry Christmas everyone!  I hope this holiday season finds you spending time with and enjoying those you love.  Bill and I are having a quiet Christmas here, but given the circumstances I think we are both ok with that.


Do you see that purple thing behind Bill's right shoulder?  That's his bed and as you can see he is not in it.  Today he spent about an hour and a half upright in a wheelchair and that's big news!  It was a bit anxiety-inducing but he did very well.  Each day he is to increase his time in the chair by 30 minutes until he can go all day.  Sitting upright after spending five and a half weeks in bed takes some getting used to, but it's a big step towards rehabilitation.  I was worried that his blood pressure might get too low (he has the tendency to get low when he's stressed) but it did not happen.

Being in a new hospital means you have do everything again and this morning a speech and swallow therapist cleared him for soft foods.  His tube feeds will only run at night and will account for 75% of his nutrition.  The rest he will eat during the day.  As he gets stronger he will eat more food and receive less through his tube, although I sort of hope they will try to fatten him up a bit first!

Many of you have asked about how you might help with Bill's recovery and his transition home.  I am grateful that so many people are concerned and want to help and know that there is a lot to be done.  While Bill is in rehab, Dad and I are thinking about changes that need to be made to Bill's house so that it will be accessible to him.  We are doing some research now and will have a better idea of the changes needed in the weeks and months to come.  I'll let you know when we are ready to go to construction.  In the meantime, I've set up an Andrew William Beck Benefit Fund at People's Bank in Marietta for Bill. 

Thank you all for your support, donations, gifts, and cookies.  Happy holidays.

Wednesday, December 23, 2009

Wednesday, December 23


Greetings from Atlanta!  We arrived at the Shepherd Center shortly before noon today and have both been busy settling in since then.  Bill spent most of the afternoon being poked, prodded, x-rayed, ultrasounded, and examined by at least half a dozen different people.  One of the primary concerns is a pressure sore that developed on his tailbone but the wound and skin specialist who examined it thinks that it will heal without surgery- truly a relief!  To avoid putting weight on that part of his body, they have been propping up one hip with pillows and switching to the other hip after a few hours.  Bill has been sure to tell anyone who examines him to reposition him so that his weight is not on that sore.

He is currently in the ICU here which came as a disappointment to him, but it's not clear how long he will stay there before moving to a regular room.  Ventilator weaning can occur anywhere, so the that part won't hold him back.  Certainly the pressure sore needs to improve and he also needs to increase his endurance for sitting upright before he can get into the full swing of rehabilitation.  It will come though.

I suspect that there will be a different approach to ventilator weaning here.  I'm not entirely sure yet how it will happen, but I gather that they use a different method.  I was also told that it was "aggressive" so I think Bill is in for a bit of a surprise.  The consensus seems to be that he will not be ventilator-dependent so I am looking forward to unloading that very heavy piece of hardware!

The Shepherd Center is truly remarkable and I'm encouraged by the small part I've seen already.  James Shepherd came by Bill's room today to welcome us and share his own story of recovering from a spinal cord injury.  The staff have all been compassionate and have wasted no time in determining Bill's needs.  In the days to come we will sit down with his medical team and set some goals for his rehabilitation.  It's still too soon to know anything for sure, but I have a good feeling about being here.  I was telling a friend a few weeks ago that I find myself dancing on that fine line between hope and denial and I'm never sure which side I will come down on next.

You can send him mail at the address below.  He can't talk yet and so he does not have access to a telephone, but when he does I will share that number with you.  The laptop will be part of his rehabilitation and we are waiting to see what sort of adaptive equipment will best suit his needs.  When we get that sorted out I will provide an email address where you can reach him.

Shepherd Center
Attn: Andrew Beck
2020 Peachtree Rd NW
Atlanta, GA 30309

Tuesday, December 22, 2009

Roger William Beck

Below is the obituary my father wrote for his father, Roger Beck.

Roger was born January 17, 1935 in Toledo, Ohio, to Rose and Elmer Beck, both of whom were from the Marietta area.  Elmer worked as an entomologist for the U.S. Department of Agriculture.  During World War II, Elmer was reassigned as an Air Raid Warden in Boston.  After the war Elmer's job moved the family to Huxley, Iowa. There Roger graduated from Huxley High School, one of a class of 12.

Roger attended Marietta College from 1952 untill 1956.  In 1955, he married Betty Swartz. They had two children, Stephen William and Elizabeth Susan. From 1956 until 1959 Roger worked as a physicist at the Battelle Institute in Columbus, Ohio. He then moved to General Motors, Delco Radio Division (now Delphi) in Kokomo, Indiana.  While there he did pioneering work in the adaption of semiconductors to automotive systems and he holds several patents.  Choosing a simpler life he left G.M. in 1974 to follow the then popular 'back to the land movement'.  He resettled in the Whipple, Ohio area to farm.  He raised several hundred sheep and goats untill the collapse of that industry from foreign competition. He then began a career in the timber and fire wood business that he would continue untill ill health prevented. It was in the woods that he seemed most at home and spent many years working in and enjoying that environment. He was in the woods, with his saw, a week before his death. As his health worsened  from advanced Parkinson's Disease he chose independence and a simpler life to advanced treatment. He died in his sleep in his own home.

Rehabilitation: The next step

I've had this post regarding rehab ready to go for a few days, but wanted to wait until we knew for sure where he would be going.  Today, finally, we got the green light from Bill's insurance company.  He leaves tomorrow morning!

I know that many of you have been wondering where Bill will go next and I haven't been very good at sharing this information.   My apologies for this, but it's been a tough decision with many different variables to consider.  These include distance from home/friends/family, length of stay, level of care, quailty of program, goals of rehabilitation, and finally insurance benefits.  We have settled on The Shepherd Center in Atlanta, Georgia.  We are disappointed that it is so far from home, but folks- I think it will definitely be worth it!  For one thing, it is a Model Systems Center for both spinal cord injury and traumatic brain injury.  The Model Systems are funded by the National Institute on Disability and Rehabilitation Research and appear to be the best of the best.  They not only have to meet very high standards for excellence in care, but they also participate in research and other good stuff that is better described over here.  Because Bill has both a spinal cord injury as well as a traumatic brain injury, it makes sense to send him somewhere that addresses both.  This is not to say that his brain injury would not be evaluated at another rehabilitation facility, but I feel that it can be better handled at the Shepherd Center. 

The Shepherd Center takes more than 300 spinal cord injury patients each year and most of them have cervical injuries like Bill.  In addition, most spinal cord injuries are incurred by men between the ages of 18 and 30.  This means that he will immediately be in a group of peers, people who are his age with similar injuries.  I haven't asked him about this, but I would imagine that he feels a great deal of isolation in the ICU.  Not only does he not have any contact with other hurt people, but no one he sees has been through what he is going through.  We have no idea what his pain feels like, what ventilator weaning feels like, what waking up paralyzed feels like, or what he might be thinking about his future.  Not only will he receive excellent care there, but he will also meet people (50 or 60 of them) who are going through situations similar to his.

The Shepherd Center also has an amazing recreational therapy program.  Now, I don't think Bill is suddenly going to take up basketball (although you never know!) but he will be able to work with therapists and do the things he loves doing- fishing, kayaking, and even hunting!  Because he has always been such an active guy, it only makes sense to focus on being active again during his recovery.  We are all pretty excited about the opportunities he will have.

We don't expect any miracles from the Shepherd Center or any other rehabiliation facility.  It is clear from what research I've done that the quality of the rehabilitation facility is a strong factor in the ultimate outcome, but it is only one factor of many.  The 8-10 weeks Bill spends in rehabiltation will only be the beginning of his recovery.  It is here that he will begin to learn to come to terms with his injury and he will decide how to move his life forward.  He will learn learn all about his injury and how to mitigate the secondary complications that go along with it.  He will begin to retrain the muscles he can still use and find different ways of doing routine tasks.  He will meet people and make friends who are dealing with the same issues he faces.  As of now there is no cure for a spinal cord injury but if we position him so that he is healthy and strong both physically and mentally, then he will be ready should that cure come along.

Monday, December 21, 2009

Monday, December 21

Today was our grandfather's memorial service so I have been away from the hospital most of the last couple of days.  A family friend filmed the service for Bill and we are waiting to scatter Granddad's ashes until he can join us. 

The trach collar breathing trials have been continuing and Bill is doing very well.  He still has some anxiety but I think it is getting a lot easier for him and he is very much focused on getting off the ventilator!  I don't know what sort of timeline there might be for this and I suspect that with him it would be subject to change.  For now he will continue to increase his time off the ventilator and on the trach collar.  At some point they may downsize the plastic hardware in his trachea and then it could be removed altogether.  After that happens, he would likely receive supplemental oxygen via a nasal canula (you see people around town with portable oxygen tanks and nasal canula all the time) and then if all goes well he would be fine with atmospheric oxygen like the rest of us.  This is a very rough description of the process and it all depends on how things go with him and what he can tolerate.  Some steps may be skipped or he may not make it all the way to breathing atmospheric oxygen on his own.  Regardless of the rest, getting off the ventilator is the first and hardest step.

Saturday, December 19, 2009

Saturday, December 19

Bill is making great progress with the trach collar breathing trials yesterday and today! These are incredibly difficult for him and he is exhausted when they end, but he is committed to doing this and breaking free of the ventilator. This is the first part of what will be a mentally and physically grueling recovery. It must feel daunting to him at times but I am certain that he will rise to this. There are many incredible stories of people overcoming the obstacles that go along with spinal cord injuries, but it's never easy.  He is slowly regaining sensation in both his right and left hands and fingers. Starting on Wednesday he has been able to rotate his right forearm. That is really good sign and will translate to more independence for him down the road. Wednesday was the one-month anniversary of his accident and he is still in the very early stages of recovery. It's encouraging to see so much improvement so soon and makes me very hopeful for the future.

Thursday, December 17, 2009

Thursday, December 17

The past couple of days have been busy!  Ventilator weaning continues and is getting pretty tough.  Using the muscles in his chest after a month of inactivity is incredibly painful for Bill and wears him out quickly.  He did not last very long on the trach collar last night and told me it was because he didn't get to rest at all during the afternoon.  That precipitated the last post regarding visitor control.  I want him to see his friends, but I want him to get off the ventilator even more.

This morning he got his permanent pacemaker and this is big news!  We are much closer to leaving the hospital now and I think it's safe to say that everyone is ready for the next step.  Apparently he asked the cardiologist for a user's manual to his new pacemaker which seems to have thrown the doctor for a loop.  I guess not that many people are interested in the inner workings of their pacemakers.  Dad recommends that we remind Bill that there aren't really any user-serviceable parts. 



This was the other big news for today.  The speech and swallow therapist came in to work with Bill while he was on the trach collar this afternoon and I asked her if I could bring him a cold one.  For those of you who don't actually know Bill: he was never without a Pepsi in hand.  I'm not sure how someone who drank that much soda never gained any weight, but he managed.  He requested that I bring more Pepsi tomorrow as well as real chocolate pudding.  They serve some kind of low-sugar, low-flavor chocolate pudding at the hospital and I don't blame him for not being too crazy about it.  He hasn't shown much interest in eating so I was thrilled to be sent out with a food request.  Anyone interested in pureeing some venison for him?

Wednesday, December 16, 2009

Visiting

We have reached the tipping point between visits being good for Bill and visits interfering with his treatment.  I don't want discourage anyone from coming, but I do want you to tell me when you want to come so that I can make sure the timing will work out.  If you don't have my phone number, leave a comment with an email address or number.  I will delete the comment when I receive it and call you.

Photos and Other Stuff

Angela Malone (Bill's next door neighbor) just asked a great question- would Bill like to see photos from home?  I think that's probably a great idea.  Bill works for American Electric Power and last week they bought him a laptop to use.  I've been teasing him that they are trying to get him to do some work while he's in the hospital, but in all truth it is a fantastic way for him to stay connected to his friends and his life.  I've been uploading some photos I think would interest him and chances are you probably have some good pictures as well.  He can take the laptop with him to rehab and have some reminders of home.  Here's what we can do: if you have fewer than 5 pictures you can email them to to the address below.  If you have more than 5 send me an email and we will work out a different method for exchange.
photosforbill AT gmail DOT com

Tuesday, December 15, 2009

Tuesday, December 15

Although it got off to a bumpy start, today was another day of steady progress.  Bill started another breathing trial before I got to his room this morning (more about this in a moment) and something did not go well so they stopped the trial.  I learned much later in the day that his left lung had a lot of mucus in it and he was probably just unable to pull air into it.  The experience shook his confidence which was disappointing considering how well the trial went last night.  Anyway, after most of the junk was removed from his lung he had went on to have a good 2-hour trial in the afternoon and another good 2-hour trial this evening.

I am slowly realizing that my constant presence is not necessarily the best thing for Bill.  He sees me as not only his proxy, but also as his protector.  He wants me to intervene when the going gets tough and save him from whatever cruel treatment the hospital staff is cooking up next for him (like physical therapy or breathing trials).  This  not only makes me feel like a jerk, but it also does him absolutely no good.  His recovery is going to be more difficult that any of us can imagine and there will not be any ways to shortcut it.  So, I've found some diversion tactics that work well, at least for now, that I can engage and then slip out of the room.  I would tell you what these diversion tactics are but Bill is reading the blog now and I don't want to give my secrets away.  Sorry, buddy.  There appears to be some sort of hospital rule about not tossing out the family because whenever I try to tell people to kick me out they just hem and haw.  I guess this is good because it means I can have an honest conversation with Bill about why my presence is hindering his ability to believe in and rely on himself, but then again having that conversation with someone in the midst of an anxiety attack is really not very productive.  That's where we stand on that.

In other news, installation of the permanent pacemaker is pretty much the last thing Bill needs to have before he can be discharged to a rehabilitation facility.  The reason it hasn't gone is yet is because of the concern of an infection developing.  Bill needs to have a low white blood cell count, reasonable cultures from all his bodily fluids, and not be running a fever.  The first two he's got nailed but he keeps spiking a fever each day.  This could be caused by several things: infection, antibiotics, or nervous system goof-ups.  Infectious Diseases (a department within the hospital) has been collecting lots of extra fluids and checking him out very closely to rule out infection.  Once that's done, his antibiotic regimen can be scaled back, and then the doctors will feel confident that his fevers are related to his spinal cord injury.  After that happens (and I don't know when that might be) he can get the permanent pacemaker and then pack his bags.

We are making plans for rehabilitation and I will share more detail when we know more.  In general, he will need to be in an inpatient rehabiltiation facility for anywhere from 6-10 weeks depending on his medical needs and his health insurance benefits.  He has had some complications so far (all the issues with his heart and lungs) so I expect his stay in rehab to be at the long end of that range.  We want for him to be as independent as possible but we also understand that he will not be fully recovered in three short months from now.  It's hard to say what his post-rehab needs will be or where he will go directly after.  Obviously we would like to get him back into his own house but it might take some time before that is possible.  I want to send out a great, big, huge thanks to his friends Ben, Matt, Chris, and Steve for working on some projects there that will lead to better accessibility!

Monday, December 14



This will be a quick post, it's late and I'm exhausted.  Today was great!  Bill did three trach collar breathing trials for a total of 5.5 hours off the ventilator.  That's awesome!  He is exhausted in this photo and doesn't think he looks very good, but I think he looks triumphant.  Besides- flourescent lighting doesn't do anyone any favors!  Anyway, the trach collar tests actually got progressively easier as the day went by.  I'm not sure what that means for tomorrow, but hopefully he will remember how well he did tonight.  I also discovered that if I take the clock in his room off the wall, he doesn't count the minutes as they slowly tick by.

Sunday, December 13, 2009

Sunday, December 13

Bill had another one-hour trach collar breathing trial last night and it went fine.  It's painful and frightening for him to go through these tests, but his lungs are doing well so we hope it will get easier as he does it more.

Today he had two more one-hour breathing trials.  Both went well and he should sleep very well tonight.  I can't imagine how difficult this is for him.  There is just no way to know how much of a struggle something so simple as breathing is for Bill right now.  I only hope that it will get easier and in a month he will laugh when I ask him about how tough it was!

I'm not sure what the plan for the permanent pacemaker is.  I think the infection-free clock has been reset because of his fevers, but I don't know when the next possible time for surgery will be.  Stay tuned.... 

Saturday, December 12, 2009

Saturday, December 12

I am tapping out this update on my phone from my parents' warm and toasty house on Whipple Run, so please ignore any weird formatting.  Friday went pretty well for Bill. We thought he might get the permanent pacemaker but unfortunately he spiked a fever at the last minute. The permanent pacer will allow him to sit upright again which is better for mind and body. The temporary pacer has a line going in through his leg that can not be bent so he has been flat on his back for the last week. It it also one big leap closer to getting out of the ICU. Anyway, because of the potential for infection, the surgery was canceled. He got lucky and did not have to do any trach collar breathing trials either. He had several visitors who commented that his spirits were better than they had been previously. I'm not sure, but even Bill might admit that Friday was a good day.

Saturday is shaping up to a good day as well. I just spoke with Dad and he said that Bill did a one-hour trach collar breathing trial this morning and that it went really well. His stats were stable the whole time and more importantly, he did not have any panic attacks. Yay! I think Dad and I might be playing good cop/bad cop but I'm willing to go along with it if it means that Bill can do it AND prove to himself that he can do it. I am the bad cop, if you are wondering. Apparently I'm too pushy, which I always assumed was in my big sister job
description. They may do another trial this afternoon. I'll update again tonight if anything big happens.

Thursday, December 10, 2009

Thursday, December 10



Today's update starts with a big "hey everybody!" from Bill.  I showed him the blog this morning and read several entries to him.  He likes the connection it gives him to all of you and he gives me content suggestions nearly every day.  He also requested I take his picture today.  If his neck collar looks crooked, that's because it is.  He's just too skinny for it to fit him properly and it always slides to the side.  It looks like it's time for a shave and some hair-combing!

The day went fairly well.  He had another bronchoscopy to remove some fluid from his left lung.  That went well and I'm sure he was relieved to have gotten out of a breathing trial today.  Tomorrow the doctors will probably do another breathing trial and he will likely hate it but it will be good for him.

Our granddad, Roger Beck, passed away earlier this week.  I told Billy today and I think he took the news as well as could be expected.  It's a terrible blow, especially to Dad, and another reminder of just how precious life is.  Mike managed to line us up and take this picture a couple winters ago.  Many thanks to our cousin Amber for cleaning up the photo for me.  If this seems like a lousy tribute, I apologize.  I'm still trying to process everything. 

Wednesday, December 9, 2009

Wednesday, December 9

Breaking off long-term, co-dependent relationships is always a difficult thing to do.  Even the fact that one part of that relationship is a cold, unfeeling, medical device does not make it any easier.  Ventilator weaning has gone to the next level and boy is it a tough level!  When I went in this morning, Bill had just started a breathing trial.  To do this they unhook the ventilator from his trach (the plastic hardware in his neck and windpipe stay in place) and then fasten a loose plastic shield over his throat through which flows oxygen-enriched air.  So- Bill is doing all the breathing and all the work himself.  It's great- a huge step and he did really well.  Unfortunately the whole thing was terrifying for him and he had one giant panic attack the whole time.  He wanted me to watch him to be sure he was breathing, to read him his vital stats from the monitor every 30 seconds or so, and to not let go of his hand.  I just can't imagine how difficult and frightening this was for him.  The fact that he did well and impressed everyone does not matter much.  Apparently most people only last a few minutes on their first breathing trial and he went for two hours!  It was hard and he did it.  I hope that he will soon be able to acknowledge his accomplishments for the accomplishments that they are.  We tried another breathing trial this evening and he had a bradycardic episode so he went right back on the ventilator.  His heart rate does not really drop anymore because of the pacemaker, but his blood pressure plummeted and he passed out.  This is the first time I had actually seen this happen and it gives me a new respect for his panic and anxiety.  It is valid.  I think that they will probably try another breathing trial again tomorrow.

Tuesday, December 8, 2009

Tuesday, December 8

Today was awesome, I won't lie to you.  Bill started the morning off with the endoscopic swallow test.  This is the procedure where the speech and swallow therapist threads a camera up through his nose and down the back of his throat so that she can watch his swallow reflex from inside.  They tried this last week and he had a bradycardic event that brought everything to a screeching halt and may or may not have ended in chest compressions (I just can't remember.  The doctors don't always tell you when they use chest compressions on your loved ones.)  This time Billy wanted me to stay in the room with him and I am pleased to say that I was able to tolerate the whole procedure.  "Tolerate" is a code word for "nothing terrible happened," which in my case means that I was able to ignore the fact that there was something stuffed up my brother's nose and wet, mucus-y, live footage of it all.  Anyway, it went very well for him, too, and I suspect that's probably more important.  He successfully swallowed thickened apple juice, chocolate pudding, and applesauce.  He was given a small bite of peaches and those got stuck.  A respiratory therapist used a suction tube to retrieve it (this is the part where I am especially proud of myself for not keeling over) and I think that was frightening for Bill.  He is now cleared to eat soft foods although he was probably still shaken up from the peach incident.  I was able to shove about four bites of lunch down his throat and I didn't even bother trying to get him to eat any dinner.  He's still on tube feeds and IV nutrition and his doctor said not to count any calories in the real food yet.  He could use some additional calories and I hope that tomorrow he will be willing to eat a little more.  I tried the pureed turkey and although it was a weird texture, it was definitely turkey.

He made great progress on the ventilator today and tomorrow we may try to go off of it for short periods of time and see how that goes.  This is great news but I won't be too disappointed if it doesn't work the first time we try it.  Three days ago no one was talking about coming of the ventilator for any period of time and we have seen that things change rather quickly.  If it works out, great, if not then we try again another day.  The speech therapist paid him another visit this afternoon and brought a speaking valve to work with.  I was out of the room while that was going on, but when I came back in they had deflated the air cuff that holds his trach in place.  This allows him to exhale through his mouth and engage his vocal cords.  I walked into the room and was greeted with "Hi Loser."  Between that term of endearment and the fact that he asked me to leave when I was trying to get him to eat lunch, I can say that Bill is back!

The past couple days he has had increased sensation in his trunk and today he spent most of the day complaining that his foot itched.  I don't know what this means aside from the fact that some sensory messages are getting through.  That's great and it's certainly more than was happening a few days ago, but I don't know what it means in terms of his final recovery.

All in all, it was a great day.  Early this afternoon Bill told me he was having a rough day and I guess from his perspective it was.  Recovering is hard work!  But from my side of the ICU, today was awesome!


Monday, December 7, 2009

Monday, December 7

Today was much better.  The bronchoscopy yesterday was really effective and Bill had a much easier time breathing today.  The doctors are now coming into his room when they do rounds (instead of standing just outside the door and out of earshot) and Bill can listen to the same incomprehensible jumble of acronyms and medical terms that we've been hearing the last few weeks.  The important part is that whatever is going on with him is not so bad that it can't be discussed in front of him.  And actually, the things going on with him today were all pretty good.  He wanted me to ask his doctors about anxiety and I did.  He was told that now that his heart and lung issues are under control, it's time to work on his mind.  He is much too young and too smart to sit in a bed and stare at the wall all day.  He needs to be awake during the day, sleeping at night, and thinking about his future.  His doctor told him there was no reason he could not go back to school and finish his degree once he's recovered.  In the meantime, we need to bring him audiobooks and movies, read to him, and keep him engaged.  This is just what both he and I needed to hear.  One of his friends actually brought a couple of movies over today and sat and watched one with Bill.  When I left tonight he was watching the Discovery Channel.  You might not be too impressed to hear that Bill has been sucked into the television, but the great part is that he wants to do it.  He hasn't wanted to watch anything until today.

He also had speech and swallow therapy today.  I think that the exciting part of this therapy might be the fact that he actually gets to swallow some juice and it's one of the only things he gets to taste.  Tomorrow they will try the endoscopic swallow test again.  If he passes that he's another step closer to food.  Today's food obsession was sausage gravy and biscuits.  That actually sounds pretty good to me, too!  While we are talking about food, his stomach issues seem to be mostly resolved and he's back on tube feedings.  Not very tasty but better than IV nutrition.

I'm not sure how tomorrow will go.  Days here are a lot like a roller coaster: up and down and twisty and frightening.  I'm not sure how he feels about it, but for me knowing that tempers the good days and bit and helps pass the bad days.

Sunday, December 6, 2009

Sunday, December 6

I am back in Morgantown today and I want to thank everyone who fed me (especially Lisa and Matt) or handed me hot cups of coffee and tea this weekend.  Sustenance for both body and soul.

Bill had a tough day today.  Although he is no longer having bradycardic events thanks to the new pacemaker, he is concerned about every single other number on his monitor.  The nurse kept repositioning the monitor so that he could not see it in an attempt to get him to relax and rest, but he still managed to crane his neck and stare at the numbers all day.  The good news is that he is now moving his head and neck more!  The bad news is that he was terrified to go to sleep for fear the numbers would dwindle and he would expire.  The irony is that with the pacemaker that won't happen.  The irrational part is that should the numbers get too low the monitor makes loud noises and fewer than a dozen steps away are many trained professionals who respond to those noises.  But none of that really matters: he woke up in a hospital bed unable to move with everyone telling him he was doing great while he feels the polar opposite of great.  I can't imagine how terrified and anxious he must feel and all we can really do is try to reassure him. 

He also had another bronchoscopy today.  It turns out I've been mispronouncing and misspelling that one.  Oops.  Anyway, this should help with a lot of the mucus in his lungs and will hopefully help him have a more peaceful day tomorrow.

Saturday, December 5, 2009

Saturday, December 5

I came back to Marietta for the weekend and that is why posting has been light. I talked to Dad though and Billy is doing pretty well. He has been spending more time sitting upright and yesterday he had another bronchiostomy. He had a fairly intense physical therapy session today and I hear that he is regaining sensation in his hands and trunk. This is not the same as motor control, but being to feel means that messages are getting through and that is great news! They have been working on weaning the vent and dialing back the heart medication. The net result of all of this is that Bill is pretty worn out- no such thing as a weekend off! He has had several bradycardic episodes so he is getting a temporary pacemaker this evening. His white blood cell counts are high right now, so the doctors don't want to give him a permanent pacer (a more invasive surgery) at the moment because of the risk of infection. The bummer about a temporary pacer is that he will have to stay flat on his back while he has it, which is risky for his lungs. This is the lesser of the two evils and I think that once his heart rate stays consistent then the rest of him can get back to healing. Dad said the nurses did chest compressions after at least one of these episodes. I'm not sure, but I think receiving chest compressions gave him a change of heart regarding the pacemaker. I'm sorry, I could not resist such an obvious and lame joke. Anyway, it seems likely that the heart medication was contributing to the issues he has been having with his digestive system. So that should continue to improve with a pacer. It's a step sideways on one hand and a step forward on the other. He is still making progress and that is what is truly important here.

Thursday, December 3, 2009

Thursday, December 3

Today was all about unloading unnecessary hardware. First thing this morning, they removed all the staples and sutures from the spinal fusion surgery from the front and back of Bill's neck. He said pulling the staples from the back of his neck was incredibly painful, I can only imagine. They also pulled the staples from the gash on the side of his head and the sutures where the brain-swelling monitoring probe was. I was told the hole they drilled through his skull for that one will fill in over time. I think this means that we are a couple steps closer to washing his hair. There is still dried blood, sticks, and who know what else tangled in it. I've been working on combing out those tangles over the last few days and frankly I'm amazed that it is not considered a biohazard. Maybe I should tell him he's got a lot in common with Sebastian, his cat inthe photo to the right. I like to tease him by calling Sebastian his "crusty cat" because it seems like every time I see him he's covered with some sort of festering, oozing, stinky tom cat wound.

Bill also had minor surgery today to remove the IVC filter that was  installed just over two weeks ago. Because his doctors are no longer worried about internal bleeding, he can take blood thinners to prevent blood clots from forming in his legs. This is a more preferable way to prevent embolisms than the IVC filter. I left around 4:30 and he peacefully snoozing off whatever medication they gave him for the surgery.

We have started investigating next steps for Bill. Although the staff at Ruby is still trying to wean him from the ventilator, they don't think he will be off it before he is released. This means he will need to go to a long-term acute care (LTAC) facility before rehab because most of the rehab centers I've looked at won't take patients on a vent. The LTAC rep I spoke to today was hesitant to have me make any plans for rehab (like where he might go) until he spends several weeks at their facility. Argh! Anyway, if anyone has experience with this sort of thing, I would love to hear about it. The rep I spoke to today said that I should trust the process and let their facility and Bill's insurance company decide where the best place for rehab might be. Does anyone else think that sounds like a lousy idea?

I was reminded today that this will be a very long process. His recovery will be measured in inches of movement and weeks. If he's not doing something now, it does not mean he never will. I am reminding everyone else so that you can remind me.  One last note: if you are considering a visit, please give either Dad or me a heads-up before you drive to Morgantown. Bill wears out easily and is still really vulnerable to infection. If too many people show up, he will sleep through your visit and if you have any little sniffle you could get him sick.

Wednesday, December 2, 2009

Wednesday, December 2

Billy has had several visitors in the last couple of days, which is very good for him.  If you are interested in visiting, please contact me so that we can work out the best time.  He is still pretty vulnerable to infection, so I would like to spread people out a bit.

Today I spoke with his physical therapist and she showed me some exercises I can do with him to keep his hands and feet limber.  Apparently ICU patients only get PT twice a week (!!!) which is not really acceptable to me.  This appears to be a staffing issue not necessarily a philosophical issue on the part of the hospital.  Regardless of why, I think he should move more.  Physical therapy means that there is a reason for you to move, and moving means going places, and going places means living.  Bill was an incredibly active guy and I can only imagine what coming to a screeching halt has done to his endorphins.  Anyway, I don't have clearance to move any limbs, but he will have the most limber hands and feet he can when he goes to rehab!  He did have a full PT session today and the sat him upright in his bed for the first time in since the accident (17 days, but who's counting?)  It was pretty uncomfortable for him and his blood pressure plummeted, but it's a start.  This is very difficult for quads to do because sitting up engages all of your abdominal muscles and he doesn't have any control of those now.  He wore a safety harness sort of thing so he wouldn't cough and lose his balance and fall.  Sitting upright is good for a bunch of reasons and we are going to work toward 3-hour periods.  In a sense, he will get a jump start on rehab if he can do it by the time he gets there.

He also had another bronchiostomy today to remove the mucus from the depths of his lungs.  This procedure seems to work well for him and is usually followed by several days of easy breathing.  Speaking of breathing, we are still working on weaning back the ventilator.  We didn't make major headway today, but we also didn't lose any ground.  We'll see what happens tomorrow.

Tuesday, December 1, 2009

Tuesday, December 1

Today was a long day.  It turns out that one of the medications that Bill gets to keep his heart rate up happens to slow down his digestive system.  So today his doctors tried to cut back the dosage in order to get his intestines going again and he ended up having four bradycardic (slow heart rate) episodes.  His heart rate drops, the nursing staff's heart rates sky rocket.  As of the end of the day they had him back on the dopamine drip.  He may end up needing a pacemaker which does not seem like too big a deal to the rest of us, but he's having a hard time with that idea.  Honestly, though, his heart is perfectly fine.  The nerves that control his heart are seriously out of whack and if we could just eliminate one jangled component with a pacemaker then he might get farther along with all the other systems.  Nothing operates in a vacuum and in that respect the human body is not so very different than the ecological systems I study.  But I think for him the pacemaker is the first potential procedure he's been aware of and I think he might be a little frightened by the idea of surgery or implanting something in him.  It's a good thing no one asked him about the spinal fusion!

He had speech and swallow therapy again this morning.  Today's swallow test included an endoscopy (a small camera run through his nose down his esophagus so that his swallowing ability could be observed from the inside).  He had an episode during the endoscopy and apparently did not swallow very well.  Not a big deal, they will try again on Thursday.  However, he took it personally (anyone ever seen Bill bow out gracefully?  Didn't think so.)  He was pretty bummed about that and I'm sure frightened by the bradycardic episodes as well.

The respiratory therapists are still actively trying to wean him from the vent.  He can't see the monitor but he knows what all the numbers mean and asks about them constantly.  I think that Dad and I thought that telling him about all of this would empower him and I think it has, but it has also given him something to obsess about.  They are turning down the settings in such a way that he will still get all the air he needs at the pressure he needs, but his lungs have to do most of the work to draw that air into his body.  Work is the operative word here, and it feels strange for him to be breathing again on his own.  Luckily the respiratory therapists know their jobs very well and are not asking more of him than he can do, despite his attempts to convince them otherwise.  At the same time I think I may be getting more popular on the floor because I am not fetching nurses or therapists as much anymore.  We are both weaning ;-)