Day 132

For the first blog post of the year, we have nothing but good news to report.  After the rough turn of events this past month, Burt has been steadily improving over the last week. 

He has beaten his staph infection and his PICC line should be removed any day now. His kidneys seem to be slowly rebounding so he has been taken off of dialysis and those tubes have been removed.  The doctors still have a close watch on his kidneys as they have quite a bit of catching up to do, but so far so good.

Burt was moved from the RCU a few days ago to the rehab unit. We believe that his progress was in no small part inspired by Burt's desire to leave his string of terrible roommates. His first, Chris was a stage four Parkinson's patient with two broken hips and pneumonia.  If the steady stream of Fox news he watched were not enough to win Burt's affection, it was nicely punctuated by clusters of floor shaking coughs and wheezes which were quickly followed with cheers from the staff saying, "great Chris, cough as much as you can."

After Chris moved on came a lovely gentleman who drank his way through the doors of the ICU. This could be easily noticed with one look at his catheter, which more closely resembled a bag of Wild Turkey than urine. In his perma-drunk state he would often kick and punch the nurses and at one point even tried to remove has catheter himself.  One nurse freaked out and the other casually replied, "he'll only do that once."

Burt's newfound coterie was all the inspiration he needed to rest up and heal. Back in the acute rehab facility Burt is regaining his strength and continuing his training. His mood is improving and his voice is getting stronger every day. He is still not eating very much, but his swallow status was upgraded to soft yesterday. This means Burt can finally begin to eat real food, because if there is one thing worst than hospital food, it is pureed hospital food.

Yesterday was Burt's 68th birthday and while the conditions have been rough, everyone is pretty thankful that he made it here. So let 2011 be a little more kind to Burt as he plants both feet on the ground and learns to walk again. 

Day 114

Early on in this process we were told that Burt’s progress would move two steps forward and one step back.  This has unfortunately been proven true in the last week.

Early last week Burt was sick for a few days.  The nurses at the residence thought it was a gastrointestinal bug, but last Wednesday he was sent to the emergency room.  It turns out that it was actually a kidney stone lodged in his urinary tract.  Burt had a 104 temperature and was very sick, so they had an emergency operation in the middle of the night to install a stent to drain the kidney.  

The back up of the kidney function caused Burt to have a Staph infection in his urine and his blood.  He was treated with high doses of antibiotics, which he will be on for the next month.  The antibiotics irritated his vein so they installed a PICC line, which is like a hard-wired IV. 

It looked like Burt was recovering well, but then on Monday Burt became very lethargic.  He quickly lost the ability to speak and seemed one step above a coma.  All he could do was nod his head now and then and sporadically open his eyes halfway.  The doctors classified it as delirium.  His kidneys began to fail and he kept dry heaving from the build up of urea in his system.

As he was essentially helpless, the Stern family became residents of the hospital.  Connie won the prize, spending 90 hours straight on the hospital, sleeping on a fold out bed next to him.  We had him moved up to a more intensive unit so we could actually go home at night. 

In the last two days Burt has begun dialysis and has regained awareness.  He is still very week and does not have the strength to speak audibly, but if you lean in close and work at it, you can decipher what he’s saying.

We are hoping that he will only be on dialysis temporarily while his kidneys rebound.  We are not sure what caused this, we just want them to heal and for the staph infection to die out so Burt can regain his strength and get back to rehab.  Our old friends Paddy and Randy from Burt’s first rehab already have dibs to kick his ass once he gets back on his feet.

Day 103

Hello everyone,

So this was a big weekend for Burt.  It was the first time he has had his whole family back together in nearly three months.  Gregory flew back from LA and was amazed at how much Burt has changed since he last saw him.  While Connie and David have been there for every step of incremental progress, Gregory was able to see a drastic shift.

When Gregory last saw him Burt was completely bed ridden.  He was just learning to be able to sit up and would have sold either of his sons for a glass of water.  Now Burt can drink by the mouthful.  The applesauce he dreamed of not too long ago is now given to him daily with his pills to help them go down.

Burt can now stand up by himself as long as someone is there to brace him once he does.  He spends most of the day in a wheelchair and has just recently started wheeling himself down the hall with one hand and his right foot for assistance.  He did not tell anyone he could do this, he just started sneaking up behind them and scaring the hell out of them.

He has a lovely private room, which is a far cry from his hospital duds a few months ago.  David set up a bird feeder outside Burt’s window and put the antenna for his XM radio on it so he can listen to opera all day. Rounding out his tech devices, Burt also has an iPad and a Kindle.  While this makes him the envy of most people in their twenties, he has yet to take full advantage of them.  Hopefully he will be inspired to soon, especially since his sons are considering adding a Wii to the collection for Christmas.

Burt is in the rehab section of the residence, separated from Gen Pop, which is full of the catatonic and the crazy.  When Gregory suggested that they watch a Zombie movie, it was pointed out to him that they are already surrounded by zombies.

With all of his tremendous strides, new challenges have become apparent.  While Burt is mostly there, he has certain deficiencies.  His awareness, his attention and his determination are slightly diminished. These are not massively obvious, but they can be seen over time. We are not sure how much he is aware of these, but are confident that with work and focus these should increase over time.

The next step is to start phasing in mental exercises like puzzles, board games and chess.  If anyone feels like dropping by for a game of chess, please do.  Beyond that we want Burt to start setting a schedule for himself.  He has to start owning his day and deciding what he wants in it.  While it is nice at times to have a more complacent version of Burt, he needs to own his recovery a bit more.  He works very hard when it is time for his rehab and enjoys company, but the issue arises when he is alone.  He needs to spend more time doing certain physical, mental and breath exercises when no one is watching to speed up his recovery.

As for this week’s news, Burt was taken for a special triple bone scan the other day to figure out what is going on with his shoulder.  Burt’s shoulder is still a source of pain and aggravation.  He wears a special brace, which is somewhere between football padding and gladiator armor to keep it supported. For the scan, Burt had to drink radioactive liquid that would seep into his bones and make them glow.  He then had to drink copious amounts of water to try and wash it out, which was good practice for the swallow.

Coincidentally this could help prove the case to finally get rid of his feeding tube.  He can now eat enough to sustain himself and takes all of his medication orally.  The last question is whether or not he can stay hydrated.  Once he proves this, they can remove the tube, which would be a great step.

Anyway, that’s it for this week.  If any of you feel like dropping by, Burt would love to see you.  If you can’t but want to do something else, send DVDs.  Burt is currently catching up on a lifetime of lackluster TV viewing.  Classic comedy routines, shows and movies new and very old, operas, all are welcome.

As many of you have no doubt noticed (and some have commented on) the blogging has grown a bit lax of late. No more apologies, from now on the blog will be updated once a week, on Sundays, without fail. For those of you looking to keep up with the goings on for Burt, we will no longer disappoint. Though there may be the occasional mid-week update (Wednesday), the posts will be posted on Sunday — but they will be posted. No more 2 weeks breaks. No more other stuff getting in the way. And now, on to the important stuff.

A bit of email and football with the dogs

It has been a big week for Burt. Yesterday, Burt had yet another in his line of swallow tests (the next one’s free for a valued customer) and passed, provisionally of course. They don’t seem to give away that “good job here’s a lollipop thanks for playing” pass so easily. It’s all about the suspense. However, this means that Burt can transition back to all his favorite foods. He is already eating his three squares a day of soft-mechanical goodness. While soft-mechanical may sound somewhat off-putting, it is a damn sight better than pureed. It is also comforting the number of things that fit into that category. No matter though, he’s racing right through it. Tomorrow, he has his first lunch of regular food that someone hasn’t ground, diced or smashed and he is suitably excited. He is now cleared to take his pills by mouth, which is the last step before we jettison the feed tube. Hopefully in the next week or so Burt will pay a brief visit to his crack surgical team for a little plumbing removal.

First cold beer...

This past Saturday, Burt went to the MET HD broadcast of Don Pasquale for his first foray back into the outside world. Though he had to attend in a wheelchair, Burt loved every minute of it. Afterwards, he went to dinner with friends and had his first non-hospital food in quite a while — fish and chips, if you’re wondering. Washing it down with a Stella Artois and finishing the meal off with a cup of coffee, it was an evening of new firsts for Burt and probably had as much recuperative effect as any of the therapies.

...and coffee

In therapy news, Burt is getting stronger everyday. His walking is much improved. He can now get up and sit back in his wheelchair under his own power with assistance mainly for balance. On Monday of next week, he will be getting a special custom brace that will help give Burt the needed support so that he can continue his therapy and walk with greater confidence and autonomy.

Burt is also finally getting back online and will be beginning to read the blog and email. Feel free to comment here or write him an email, he’d love to hear from all of you. For those who want his phone number, drop David an email.

Until Sunday.

Day 69

A minor update but exciting for Burt. Last night, at some point his feeding tube disconnected but did not stop running for the entire night. It soaked his bed, his clothes and the floor surrounding his bed. Don't worry this isn't the exciting part. While he described that part of the experience as vile, it did lead to the first shower in almost ten weeks. The shower was the best he'd ever had, regardless of the bench.

Sorry, no pictures.

In other news, Burt is eating more and should be moving off his feeding tube completely pretty soon. Keep on chewing Burt! In sports, Burt is keeping up with his walking, getting stronger everyday and is going to start working on a recumbent bike in the next few days.

Day 63

Once again, sorry to all for the lapse, we are trying to regularize the posting again. At the moment both Stern brothers are out in LA, leaving Connie to hold down the fort for a bit. So, today we have a special word from the man himself.

Burt has been at the nursing facility for about two weeks and is adjusting well., Though the first couple of days were a little grisly, as Burt was initially put in one of the regular nursing wings rather than the rehab one. The halls are full of the aged and infirm with an emphasis on senility, dementia, psychologically impaired. The staff do their best but ut is not a place you want to be if you still know the difference. As Burt said, "As long as they stay out there and I stay in here, I'll be all right." He was only partially kidding. Thanks to the facilities extraordinary director of social work and the championing of his PT and OT people Burt made the move to the rehab wing a day and half later.

Burt and the nursing and PT/OT staff work out his care

watching baseball in the new room

Now, he is as comfortable as one can be when not able to go home. He has TV, DVD, internet, books, music, furry friends, winged friends, and exhausted family. All told, it ain't so bad.

Assisted standing and weight bearing

working with Becki on his 'guns'

e-stim with Peter

He is still working hard everyday in rehab. The new people are great and Burt's determination, humor as well as Connie's cookies win everyone over. He has been getting e-stim on his shoulder to pull in the subluxation, as well as on the different muscles of the legs.

One of the physical therapists has been using a method on Burt where she twists and bends the foot until the muscles of the leg engages to yank it out of her grip. At that point, she can use that muscle movement to engage other muscles in compound movements. he results have been striking at times. The only drawback is that the initial wrenching of the foot causes Burt a lot of pain and it is this pain impulse that causes his brain to activate the muscles and pull the leg away. It is literally a case of no pain, no gain. Burt was fitted for a new brace the other day which will provide him with some much needed support to improve his walking. Everyday he is making strides.

In other news, Burt has finally passed his swallow test and is eating more, trying to build up his swallow and chewing muscles to be able to get all his sustenance from food rather than the g-tube. He is beginning to transition to a soft-mechanical diet from pureed. This is the first time real food starts getting integrated into his diet and it feels like eating. It is a slow process and not as satisfying as a cheese burger, but it is another step on the road.

Day 47

Today was Burt’s final day in the acute rehab unit and it had a somewhat subdued air. He has had a lot of triumphs and done a lot of hard work in this unit. When he came in he could barely sit up and now he is on his to walking again. The place has taken on a feeling of home for Burt and the staff has become family. It is never easy to leave home, especially when it is not by choice. But, as uncomfortable as change is, it has its positives. As his friend Lonnie said to him, “Change is your friend. You have come through the worst and now with every week you will be stronger than the last. Staying in the same place will do you no good now. Don’t even think about it, just move forward.”

The day was filled with the discharge evaluations as his physical and occupational therapy teams measured his progress between intake and release. In the morning, Mike took Burt through his occupational therapy evaluation. His left arm is still not responding as much as we hope. It is slow progress. His shoulder is still very tender and the muscles pretty slack. After his OT eval, Burt took his last walk with Pati and beat his own record again — a new personal best of 54 feet. Then, it was back for a bit of rest before Bonnie took him for his PT evaluation.

Burt’s left leg is a lot better than it was. His balance is much improved. His sensation seems fully intact and his positional awareness is quite good on the affected leg— when his left leg his positioned in a certain way, Burt can copy it with the right. These are often faculties that stroke hit quiet harshly. First, Bonnie tested Burt’s range of motion as he lay in his bed; Burt is probably more limber now than he ever was before. Afterward, Bonnie took him to the gym to test his muscle strength. She positioned him on the mat, with his leg on a board, so that she could isolate the muscles and have them work with minimal interference from friction and gravity. The two videos below show the really amazing results Burt has achieved in the weeks in rehab and give us all a lot of hope for what he will achieve in the next rehab.

After his tests were finished, Burt had a bit of applesauce and some water before getting back in bed. At about five-thirty, Lonnie came by to work with him and by six he was back in bed ready for the live cast of Boris Godunov from the Met on Sirius set to begin at seven. Connie and David packed some Burt’s stuff out to the car. Burt lay back amidst his pillows and drift off listening to Mussorsky.

Tomorrow, the Sterns venture to the new facility, leaving their new family behind. But they were all new as well just a few short weeks ago. Burt is sure to win over the new staff with his hard work and attitude just as he did the old ones. His advocates and therapy dogs want all to know that they will be there every day, they will be watching every move, and they will be bringing cookies. Let the healing journey continue as we step with the right and schlep the left.