Day 78 - Updates

Good news. Daniel's liver numbers seem to be improving and trending downwards. If that continues trending down in the morning he will be discharged from the burn floor to begin his rehabilitation full-time on the 8th floor. We're happy with the improvement in his liver as this was the only thing holding him back from rehab. Results from some of the tests are still pending and they would identify if the problem is an autoimmune disorder or something else. The tests can take up to a week so we won't know for sure if there's a larger issue with his liver, but for now things seem to be improving. More likely than something truly bad with his liver is that there was an interaction with the drugs that caused temporary harm to his liver, but as I said he seems to be bouncing back.

Too many onions!

His OT J. worked with him this morning doing arm stretches. She believes his left arm was forming scar bands which is a normal thing to happen with extensive burns, but wanted to rule out HO that could be forming along his elbow joint. An x-ray was ordered of his left elbow. We saw the x-ray picture the technician took of his arm before he left the room. Though we haven't heard an official word yet from his attending doctor, we're pretty sure that what we saw was HO. I'm just hoping we are wrong. He already has HO in his right arm so this would really limit his ability to do many tasks when he gets home with now both arms compromised.

Today Daniel seemed a bit more cranky than he has. He didn't want any interaction, touching or hand holding or really much of anything from me today. I wanted to get some lotion on his dry skin, but even that was something he wasn't much interested in. I was able to rub lotion into his lower legs and he seemed cool with that, but I couldn't do much anywhere else. Poor guy.

His PT S. worked with him today as well. More stretching of his arms was her focus. The PTs & OTs are thinking they need to do stretching with Daniel twice per day so they're using their time with him to do that instead of practice walking or doing more functional tasks like manipulating puzzle pieces or feeding. Leave that stuff to rehab.

I can tell the stretching hurts like crazy and he's not happy at all about it, but he's letting them get their work time in with him so that's something. This afternoon during round 2 I thought it would be best to let the PT work on Daniel without me in the room to see if he would be more cooperative with them. (Maybe less whiny?) I'm looking in through a small window watching them work right now. It seems to be going okay. He's laying in bed, the PT is using lotion on his shoulders and arms to help calm him and talking in a low soothing voice, encouraging and going slowly with the stretches. He's doing pretty good considering what they are doing to him.

The PT finished up with Daniel. She felt he did great especially with his shoulders. He would not let her move his elbows at all though. He would tighten and #RESIST - his own form of protest! After the PT finished I built a little fort of blankets and found objects to let Daniel's head hide in and he let me hold his hand again.

Later today I will try to take things easy with Daniel, just try to keep him awake and maybe slightly perturbed with me, but otherwise take things easy. I don't mind if he's a bit pissed off with me - maybe it will take his mind off his body and the pains that are signaling through his system. It seems like he's not too happy today so I'm not planning to work him too hard. We'll try to get a good meal in this evening.

That's the plan.

Day 77 - Stuck Inside of Burn Unit with the Rehab Blues Again

A lot happened today. Daniel remains in the burn center until his liver problem clears up. Rehab is for well-people and Dan's liver disqualifies him for now. I imagine Daniel is singing the Memphis Blues of Bob Dylan...

Oh, the ragman draws circles

Up and down the block

I’d ask him what the matter was

But I know that he don’t talk

And the ladies treat me kindly

And they furnish me with tape

But deep inside my heart

I know I can’t escape

Oh, Mama, can this really be the end

To be stuck inside of Mobile with the

Memphis blues again

Meantime Mr. Dan (the ragman who don't talk) was measured for garments today. The ladies did treat him kindly and measured him with tape. And deep down he may be thinking he can't escape - the burn floor... Oh, Mama,... It will be three weeks or so until his gloves and "shirt" are ready. Maybe we could actually be home with Daniel by then, but we'll see. One day at a time.

[I have no clear idea what Dylan was writing about in this song; the lyrics get even stranger after this first verse, but these words oddly echo some of what's going on with Daniel these days as the song creeped in to my head at some point today.]

After his garment measuring - they measured every inch of each arm, fingers and torso, up and down - we got to pick colors for his first set of clothing. We chose Bronco blue and orange stitching. He will get a second set in different colors once we verify the fit of the first.

After the ladies finished measuring him came a one-lap walk around the floor while wearing ankle weights. His walk is steady, his stride is fine. If he knew the way I think he'd book it out of here.

We ate a late breakfast then heard morning rounds. We discussed his liver and the observation that his face is looking flushed for the past two days. Nobody is quite sure why the face is reddened. We all agreed to drop one of his medications to help rule out any problem with it and his liver. All the medications he takes has to be broken down by the liver at some point. Some medications can take a toll on the liver. A few of the meds have a 1% population of patients where they could affect the liver so nothing glares at the team as the culprit, but we'll change one thing then measure and take action slowly to try to isolate if it's a medication problem or something else.

The mama holding her baby boy

The team also ordered an ultrasound of his liver and gallbladder to see if there's a problem with blood flow input/output and other "stuff" you can learn through one. He had to fast for a few hours so we may have a problem meeting his calorie and protein goal today. The ultrasound data will be sent to a liver specialist for interpretation and then we will learn if there's damage or a problem or perhaps how to proceed from here. We may know something as early as tonight.

Sporty PJ bottoms yes?

After the ultrasound technician left Daniel's favorite OTs returned to measure his arms for custom splints to help with the elbow stretching HO problems Daniel has. He has become a bit leery of the OTs since they usually inflict pain with their visits. Even though they were only measuring he complained and seemed rather unhappy with their company.

We also chatted with his OTs about !breaking! the HO hold on his elbow. We had heard of patients who had eventually broken the bone deposit on their own after they left the hospital. Can you imagine how painful that might be?  We wanted to see if this was something his surgeon would consider - he said "NO", but we haven't given up on this thought so that's one idea being tossed about among Team Daniel to deal with HO.

In a short while we will give Daniel a shower in the tub room. I thought we'd be doing this up on the rehab floor by now, but we're here still on the burn floor. Some day I hope he can enjoy a shower again, but right now I don't think he will take much pleasure in it.

Day 76 - Yes We're Movin' on Up

We were informed last night that Daniel developed HO in his right elbow. An x-ray confirmed it. Heterotopic Ossification (HO) is the presence of bone in the joints that limits movement and is very painful. The underlying cause is the burn, but there's not a clear understanding of why it happens. From what we've learned so far the rogue bone tissue is inoperable at first and will continue to grow for up to three years. Until that time operations to remove it doesn't help much because the bone continues to grow. Whatever the range of motion that you have is all you'll get until some intervention to remove the bone mass can be done. There is some research for treatment in the first six months, but it doesn't sound like anything has developed to the point where it would be an option for him right now.

For Daniel this is bad news. It means his dominant right arm will be somewhat useless for the next few years. He will have to learn to use his left hand for feeding, care and most activities while the right arm sits idle. We will continue to work and stretch his right arm, but the focus for rehabilitation may shift to his left arm more.

A short nap after breakfast

==+
In a short while we will be Movin' On Up to the 8th floor to begin Daniel's acute rehabilitation. The first day will be a time to get moved into his new room, meet his nurses on the floor and learn more about the activities he will do with PT/OT/ST's. Dawn and I have already visited the floor all Magnum, P.I.-like and saw the gym, peered in an empty patient room and checked out a few other facilities up there. When we visited it was a Full House of activity in the gym. I imagine Daniel will do okay whether the gym had patients in it or it was empty. The new workload for Daniel will be a Quantum Leap from what he was doing here in the burn unit, but we had to first heal the wounds before we could do much of anything else. That didn't stop us though we had him using his arms to eat as much as we could and he received therapy from OT/PT/ST here too, just for shorter durations. And the emphasis was on his healing his burns, not rehabilitation.

We've heard that as soon as he's on the rehab floor they like to get him in the shower, take body measurements (oh behave!), and perform other measurements for range of motion, assess pain levels and what-not so that Designing Women can build a daily routine for Daniel to work his way through each day. You know what they say - Diff'rent Strokes for different folks.

If yesterday is an indicator it may be Three's Company in the shower with Dawn and I helping nurses to get him clean. We've been Moonlighting as nurses around here anyway. With Daniel being as tall as he is it will be Max Headroom in the shower space. We will have to use our MacGyver skills to accommodate his needs with the limited arm ability of his right arm. I may need a Newhart after all the time and work we've been doing here.

It will be interesting to see Who's the Boss when it comes to his doing his therapy. This won't be a Love Boat cruise, but we hope he will be on the A-Team of patients and cooperates with the therapists. He may be going through some Growing Pains as he adjusts to the new routine in rehabilitation. Those are just The Facts of Life.

(In honor of the Jefferson's Movin' on Up theme and other fabulous 80's TV shows) Cheers!
==+
Well here's a crappy news update... :(
We're going to spend at least one more day here on the burn floor. Before they send a patient off the floor they do a final check with a draw blood all to make sure he's well enough to move to rehab where the emphasis is on rehabilitation and less on medical health.

What they found is that Daniel's liver function is a bit off. It could be due to Tylenol or Oxandrolone. He's been taken off both over the weekend, but they can cause liver issues when in use. Other medications he is taking don't harm the liver typically. It could also be issues resulting from the burn. They will draw more blood around noon tomorrow and see if he's turned things around. If so, then he can go to rehab, otherwise he will stay here until his liver is well.

...So much for the 80's.  
==+
After lunchtime Daniel was acting sort of like he was uncomfortable. He didn't want to do many activities and when the PT arrived to try some activities he got fairly angry. He stomped his feet and slapped his leg the way he can when he's been upset at home. After a bit of persistence we got him to do an activity with a balloon and then we took a short walk. Actually for him it was a run. He decided when he saw a group of nurses a short distance away that he would go up to them and tap one on the shoulder, turn around and book it back to his room. That was his way of saying I'm done with this walk, I'll pick a target and turn around and head back to my room. ALL DONE. I wasn't sure how this was going to go down, but he kept his cool and didn't escalate his frustration with the day's events.

I'm not quite sure if he picked up on the changes coming his way (we packed up his room and stuff), if he sensed our concern with his new problem elbow, or just didn't feel well from the liver issue. Whatever it was he made it clear that he wasn't particularly happy with how things were going. One thing he's doing that I haven't seen him do too much before today is that he's moving his hands and fingers around a lot. I've massaged them and held his hand. Not sure that it all means. Perhaps he's just having an off day?

We're going to try some dinner sitting up in a chair, then I'll see where that takes us. I hope he has a restful night and we can move forward with our plans tomorrow.

Day 75 - Last day in Burn

This will be our final day on the burn floor. It's finally here, Dan is moving to acute rehab and then home! For our last day here nurses will try to give Daniel a shower in the rub room while he sits up. We will watch to learn all the steps of wound care. We've heard that not all the nurses in rehab floor have the special training to do burn care as they receive all kinds of patients from all the areas of the hospital. There are a few unique things with burns and the dressings that we've learned a lot about, but never seen the dressings in process fully. Seeing wound care today will help with knowing how things are supposed to be done and we can help ensure his dressings continue correctly.

While eating today we had Daniel feed himself with his right hand. We noticed that he will not turn his wrist and hand vertically so his thumb points up. This twisting motion does something in his elbow that causes great pain. This limitation is something we need to get working and we will talk with staff more about this soon. He will not twist his arm in this way. It seems that the natural motion for eating involves holding a utensil and twisting your arm as it moves towards your mouth.

I have confidence that there's some solution to this problem. It may involve something simple like massage or heat or cold or some other kind of therapy. Perhaps it requires something more. Maybe it's a problem like I mentioned yesterday with HO. We'll find out what to do and make it work. Like I've written before - burns are the kind of injury that keep on "giving".

Jamie will be stopping by this afternoon. J. the OT will be stopping in as well and we hope they can trade ideas and review where Daniel is with his needs from a home perspective and try to incorporate that into his hospital therapies going forward.

That's about it for today. Tomorrow we're movin' on up... to rehab.

Day 74 - Visiting Day

Daniel was receiving visitors today. First his grandparents, then S. from S. There was the usual visits from members of Team Daniel - his attending, nurses and PT today as well. There is some concern from the PT/OTs that Daniel's elbows may be getting a build-up of calcium called heterotopic ossification or HO. This is just another fun thing that can happen after a severe burn injury. It can cause painful joints - in his elbow. An x-ray can identify the problem, so that might be the next step to determine if that's what is causing some of his issue with his right elbow. I may revisit this concern in future blog posts.

While the grandparents visited I attended a SOAR meeting with burn recovery victims and asked questions about rehab. I learned some tips and pointers and feel good about this next phase of recovery. While I believe Daniel, Dawn and I will be really challenged by the painful tasks of PT/OT that await him I think Daniel will work hard and surprise us as he has all along. He's such a hard worker, aims to please and never gives up.

Today Daniel sat up the entire day in a chair. He did fall asleep for a bit in his chair, but otherwise stayed awake the entire day. Sitting in a chair is good work for him. "Work" - Seems funny to say that, but if you consider where he was not long ago you'd wonder if he would ever regain the strength to do much of anything. We can build on this and get him back to normal. I can see that, but to reflect back in time it sometimes seems to amaze me with how strong his will is and how far he's come.

Day 73 - Meet with the rehab therapy team

Monday will be the day Daniel moves up to the rehab floor. This in itself is a big achievement for a burn patient. To plan for the event the OT and PTs from rehab met with us and his current therapists to discuss how to best work with Daniel. We met in his room while he was in the tub room for wound care. We reviewed the therapies he's been doing and learned more about the rehabilitation floor.

Up on the 8th floor each patient has a private room with a shower. Up to now Daniel was bathed in the tub room while laying flat, but that's about to change. The shower has a chair that he can sit in or he can stand and nurses will help to wash and clean him until he can do some of the tasks on his own. His day will probably be fairly structured with solid sessions of therapy for PT, OT and ST. Down time will be consumed with short rest periods and time where he will wear his gunslinger, faceplate and such. If he can wear the faceplate and foam wedges during the night then he will have enough time in the day to fulfill his therapy.

We expect that Daniel will be in rehabilitation for up to a month and we hope he's ready to go home by that time. We have two main goals for him to be able to do: be able to go up/down stairs on his own since his bedroom in our old house is on the third floor; be able to feed himself. The therapists will work on these and other skills like dressing, self-care and more range of motion.

There was a snafu with getting Daniel fitted with garments this week, but we've been told that they will come out next week to measure. Then it could take up to a month before they are delivered.

Daniel received wound care today in the tub room. This might be his final visit to the famed tub room. He also had his cast removed and we decided not to put it back on as we didn't think it was getting the stretch results we were trying for. Also it seemed like the nerve block that we installed a few days ago did not work for him this time. While the cast was off Dr. Wi. looked over the graft on his elbow and it looked really good. So we believe all his grafts are healing nicely and we feel he is ready to move off the burn unit and onto the rehab floor. Monday will be a big milestone.

Day 72 - Out of State Visits

We had a morning visit from Gordon and Karen today. They thought Daniel looked really good and that he had made good progress from his January burn. Daniel was not in the best of moods refusing to eat much of his breakfast and making ¨eeaahh¨  protests with eat bite. While his protests are nothing new, the tongue pushing out most foods was. This morning was not his time to be a big eater. Maybe he was down, or just not super hungry - that's the thing with this guy you can't really tell what he's thinking. Mom did get Dan to eat a bit of a protein bar at least. Dan was pre-medicated for physical therapy which usually gives him a long sleepy-head face as those meds kick in. The eyes start to get heavy and everything slooowwwsss ddooowwnnnn.

After visiting with his Aunt and Uncle, Daniel was "worked over" by his PT who did arm stretching followed-up by a walk around the 3rd floor with his mom. While the visit was short it's good to gain perspective from family who know Daniel and are able to see changes that aren't as apparent to us. 

While the humans were visiting Daniel, this little 13-week noname pup was learning all about stairs, running, chasing and ballplay from Sydney and Chaka. Oh and barking, growling and chewing too. Chaka revealed how he can steal puppy food and Sydney did her best to show how all REAL dogs should bark REALLY LOUD all the time when it's playtime - which for Sydney is defined as any hour of the day a ball is in view. 

Needle teeth are good at picking up ball.

I escorted G&K back to our home so they could pack up and head east. 

Meanwhile back at the bat-cave... mild-mannered Daniel and Dawn are... no, um...

Daniel and Dawn are eating peanuts and discovering that Daniel prefers the wild berry and orange flavors of Boost Breeze, NOT PEACH! Blech!! Maybe that's why breakfast was to yukky.

After a break Dan's OT came to work with him. We ply him with candy usually so Daniel is more willing to "perform" even though it's hard work to move his arms and grab and try self-feeding.

==+

After another spin around the floor and a break it was time for dinner and Jamie stopped in to check on Daniel. She noticed that part of his body burn-net was cutting in to his armpit and trimmed it down to make it fit right. She started massaging his arms, shoulder and back after Daniel slowly ate dinner. She found some really good stretches and massage that Daniel enjoyed immensely. No protests, just a really super-relaxed face - his whole demeanor changed and for the first time here at the hospital I saw him return to his calm relaxed self. 

My Happy Place