1/28 - Sam's Journey - Day 47

I know it's been three days since I last wrote, but since being at acute rehab, our level of involvement has increased a LOT, so when we finally finish with our day, we're pretty wiped out. Now that we are on this leg of the journey, there are new challenges and triumphs every day. Everything has a different tone here. They are not only working with Sam, but with us as well. They're preparing us all to come home. In all honesty, most of us feel woefully ill-prepared for that step right now. It's hard to think about the possibility of bringing him home with a trach, a feeding tube and a wheelchair. It's hard to think about what modifications we will need to make to the house to make it handicap accessible. That is one of the biggest challenges of being in the new place--knowing that our boy will not be as far along as we had hoped by the time of his homecoming. We knew it was a very likely scenario. Now it is becoming reality, and it is hard. In no way does that mean that we have abandoned hope for a full or almost full recovery. It's just a little hard to wrap our heads--and hearts--around it all. Throughout each step of this, Sam, along with the rest of us, have been in the absolute best place possible for his recovery, and we know that will continue to be the case as we move forward. I realize that's not the most uplifting opening paragraph, but it's where we are. Keep reading, though. It does get better.

Sam has had a very good first week with rehab. The biggest goal of this week was to see how well he could tolerate the therapies they tried with him. He did not disappoint! He has been visited primarily by Physical Therapy (PT), Occupational Therapy (OT), and Speech (which includes a lot more than just speaking.) Everyone we talk to says that while all of the therapists there are fantastic, the ones working with Sam are the best of the best. Here is some of what went on:

PT: This week we started with some stretches, along with getting as close to a vertical standing position as possible on the tilt table, while his blood pressure and heart rate allowed. Yesterday, he made it to 70 degrees. The therapist was so happy with that, today he decided it was time to try sitting up on the edge of the bed. The goal with that was to see how much Sam contributed to the process, and if his vitals cooperated. He did very well, starting to tense his abdomen to try to find balance.  At one point, he tried to shove himself back over to a lying position because he'd had enough. The therapist was very positive about the direction Sam is headed and said something along the lines that he was impressed with what he was seeing. I mentioned this to the nurse later, and she said that he does not hand out praise lightly. We are very encouraged by this.

OT: Because he is hardly moving his left side at all, in an effort to not lose mobility in his left hand, he now has a splint. This will make things easier rehab-wise once he does start engaging that side of the body. The boot he'd been wearing on both feet (alternately) has also been relegated to just the left foot. The right limbs are moving enough that he is not in danger of losing flexibility and range on that side. The therapist also showed me how to do neck stretches today, and as he did, he said that it was already better than when they did the same thing yesterday.

Speech: We are working on using a Passy-Muir valve which means we're working on getting his voice back. In terms of the trach, he has been off the vent for quite a while now. Throughout the rest of the day he's on the trach collar, which provides him moisture, unless he's getting moved to take a shower of get on the tilt table, or something else. If he's moving he gets an HME, and all air, inhaled and exhaled, passes the route of the trach. With the speaking valve, the air goes in through the trach and is pushed past the vocal cords. While exhaling, the trach is blocked and all air leaves via the mouth and nose. While using the valve today, he did well, meaning he was breathing well without using the trach 50% of the time. The other part is that we actually heard his voice. It was not intentional, but it was clear that's what we heard. The speech pathologist was over the moon at this and told him that he made her day. 

Today was a very good day.

That pretty much sums up Sam's week. The rest of our week while not working with him involved paperwork of various types and taking care of all of the other things in life that have so rudely kept demanding attention. The bills need to be paid and the cats need to be fed, and Sarah, although she probably would be willing, would DESPISE the walk home from Senior after softball practice. She has been amazing through all of this. She has been trying to carry on her life as normal, which is pretty crazy without all of this other stuff going on. We are incredibly proud of how solid she has been. And Aaron has also been as involved as he can be at more than 800 miles away. If nothing else has come out of this situation, as a family, we could not be stronger or love each other any more, and we are grateful for that.

Today's prayer requests are rather simple--that Sam continues to move forward in rehab, that this horrible lip-biting phase stops, and that he WAKES UP. That will make all of the difference in his rehab. Every day he makes improvements, and we know he's getting closer to more consciousness. Our patience muscle is just a little tired on that front right now.  Thanks!

This picture is from the Youth Gathering trip this summer. Hopefully it warms you up if you're still recovering from all of that snow last week!