Transitions

Dan - stretching shoulder in the CPM beast.

Daniel has been doing really well lately with all his healing and recovery. There are growing concerns that I'll mention, but first let's tick off the accomplishments.

Daniel had some very alarming test results regarding his liver when he moved from ICU to Acute Rehab - this was back in early-mid April. In fact he was delayed about a week before they let him leave the ICU floor until his liver numbers began to spiral down. Our follow up this week confirmed that his liver is once again fine and that while we and the doctors don't really know for sure what caused the problem, all is well now. All his test numbers for his liver are within the normal range. The most likely cause is some kind of reaction to all the numerous medications he was on, but really we can't know for sure and since it's all okay now, we can put that worry to rest.

The giant friction blister on his leg is nearly all healed. He got another small one on the back of his calf, but it's healing too. No signs of infection or problems.

Daniel's range of motion in his shoulders is increasing. I credit all the daily stretching that Dawn and he do together for most of this progress. We think he enjoys this special face-to-face time with mom at least until the actual painful stretching commences. He also receives visits a few times per week from an OT and PT that also find ways to work Daniel and engage him in activities that work his arms. All this activity helps him to use his arms in the limited ways he is able.

Daniel can get in and out of a car with ease. He is able to fasten his own seat belt too. He still claims shot-gun, but I suspect Dawn will begin to negotiate that with him soon.

Dan is doing walks in the early morning and late evening. We keep him out of the sun and cover him up, slather on the lotion and keep him safe. His skin is really sensitive and fragile. It can burn easily and it can also bruise easily.

Daniel seems to have no issues with moving his body around the house. By that I mean that he knows his own body and its capabilities. He is careful where he needs to be, knows where to duck, how to move slowly and purposefully on stairs and around furniture. He has never fallen or tripped - if that were to happen he would probably injure himself and I can tell that he doesn't want that to happen.

Daniel is getting out of the house when possible. He goes with us on short grocery shopping trips. He handles the cart and seems to enjoy the outing as he used to. He also enjoys walking the block to a place where he can get a massage. His therapist - Jason is very gentle with him and his skin. The only hard part for Daniel is laying face down on the table and getting back up. We all three help him with that process and once in position he relaxes and enjoys it a lot!

We have to make various frequent trips to doctors and offices for checkups. Daniel hates waiting in an empty exam room and he hates car traffic going to and from, but is pretty patient and at ease once the nurses and doctors start examining him.

Daniel's pain seems to be managed well and we are steadily backing off his pain medications which is great because that will also help with BMs and what not. The more medications we can wean him off the better it is for his liver and kidneys so again, we're glad to see him handling all this so well.

Daniel has gained weight. Daniel weighs more now than he did when he entered the ICU in January. That's treat progress. He seems more content with eating and doesn't complain all that much when eating. Last week we took him out to dinner for Mexican food and he was awesome. Sure we get a lot of stares because his face still looks pretty gnarly and he holds his arms weird and wears odd garments (all part of the burn scene man), but if he can muster a smile it doesn't bother us what other people think. Nothing new there - we've been dealing with strangers and their glances for a long time.

More and more Daniel seems to be expressing his happy feelings. That's been a long time coming and it feels wonderful when his happiness shines out to us. So on the whole he's really doing well. We see smiles, happy hoots (you know the ones) and he wags his tail (if you know him, you'll know what that looks like).
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Things that we are concerned about: - the big one is his HO (heterotopic ossification) in his elbows. We've begun to notice that his fingers and nails turn blue at times and we think the circulation is restricted when his elbows are bent in flexion. That's a concern and we haven't found anyone who can address it - yet. HO occurs in about 20% of burn patients and is not an affliction that many people seem to know much about. His burn surgeons don't have good suggestions - it's not their area of expertise. The rehab doctors haven't responded yet either, but this isn't an area they really focus on so I doubt they will be much help other than to refer.

Today we had a routine visit with the burn clinic and were able to get a referral to orthopedic offices. We will see if they can turn up anything or have some expertise with HO. We think that seeing an orthopedic doctor this is the best direction to go, but we need to talk to them and see what they think.

We have a few contacts with other burn survivors who had HO and may be of some help and can tell us what it's like, what they did or who they worked with, but right now we're in a holding pattern. Dawn has found some articles on-line, but not a lot that seems to help us with what we need. Most of what we've read is somewhat depressing frankly.

With all the weight Daniel has gained, his compression garments seem a bit tight so we'll be asking for alterations for that next week. That could also be a cause of the restricted blood flow to his hands, but we've seen the problem when he's not wearing his garment so it's not the sole cause.
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Well that about sums up things with Daniel and his great progress.
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Me - Yesterday was my final day at work at Euclid. It was another bittersweet day for me. Once I was finally at home I felt a bit depressed and unsure of what to feel really. I have no immediate plans for work and don't want to think about that until this fall. By then we will have a better handle on Daniel's needs and I'll have a handle on what I want to do with the next few years for myself. So rather than rattle on with this or that I'll just say that I plan to enjoy the summer in whatever way I can and put plans for work on hold until the fall or later. No pressure - if that's possible??

So for the next couple of months I've hoping to connect with friends for a beer, a bike ride or maybe some hikes. I'm even doing a triathlon this weekend so that will feel like an accomplishment to be able to that for myself.

Dawn and I were able to go out for a date night a few days ago and we had a good time walking down to Lodo and enjoying a nice relaxed meal. We've also escaped for lunch dates while Daniel is with a respite provider. So, we are getting out together and that's good for us right now. Soon we may be able to do some kind of overnight away as we've got people who are slowly learning to work with Daniel in our absence. It could be later this summer or who knows when, but just knowing it's a possibility is great.

We're also thinking that Daniel is ready to travel some and we hope to visit Amanda out west shortly.
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So if you see us walking around the neighborhood or want to stop in and say hi, we are often at home or nearby doing some "fun" therapy with Daniel every day. Don't be shy.