3/10 - Sam's Journey - Day 89

Sorry for the posting delay. We're on Spring break this week, which means it's time to catch up on a lot of things around the house while spending as much time as possible with Sam AND getting the house ready for his return. I had written several times last week with all of the excitement, so I hope that was enough to tide you over until now. 

Highlights of the week so far:

• As you probably know by now, the trach is out! No one is happier about this than Sam. When they brought him back to Children's, his admitting nurse was one that he had had a lot prior to moving to rehab. She was floored by how far he had come since she had last seen him. It's always nice to have that perspective since we see him pretty much on a daily basis, and the changes can be harder to see for us.  The bronchoscopy went well, and there were no issues with the decannulation procedure. When they take it out, they let the stoma (the hole where the trach is inserted) close up on its own. It's kind of like when you pierce an ear, and shortly after you remove the earring. It just kind of takes care of business all by itself. If it doesn't do that automatically, they sometimes put a stitch or two in, but Sam didn't need that. As of Friday, the nurse said that it was about the size of the head of a pin. Sam's doing great, and his oxygen levels are holding just fine. Because the trach is out, he was moved to the non-respiratory wing today. So far, it's been a good move--at least for us. The room is bigger and there's some flexibility in how we can arrange Sam's bed, which I'll talk about below.
• Sam's been making more good progress in all of his therapies. In PT, he has been on the treadmill and doing more work with his left leg. They have also started doing electric stimulation on his left side, which gets the muscles to contract and hopefully wake them up some more. He doesn't like it, but he doesn't put up too much of a fuss when they do it. The big news of the day is that (with a boatload of supervision and spotting) got himself into his wheelchair today by himself. Jim was here for that, and he said once he was in his chair, he smiled. Sam knew that it was a pretty big deal, too.
• OT has been busy with working his muscle groups and making sure he doesn't lose range of mobility for when that left side starts moving. He is sporting some spectacular "racing stripes," which are 3 thin strips of medical tape that run the length of his arm all the way up to his shoulder. The idea is that they will call his attention to the arm (read "irritate him into noticing it,") and hopefully start moving it. He is also looking left of midline much better, but it is still a big effort for him to do that. We try to make him do as much as possible to the left to keep him working on that--sitting on his left side and having him look at us, putting things to reach for on that side, etc. When we moved to the new room, we were able to put the right side of the bed against the wall, so now everything happens to his left. It's a good thing!
• In neuropsych, I saw him do some writing. He was able to write his name, middle name included. He thought it was 2015, but that's understandable since that's when the accident happened. Frankly, I sometimes still think it's 2015, too. Maybe it's a genetic anomaly. Anyway, my favorite part was when they played a color game. The doctor gave a category and set an egg timer. She would write something in the category and Sam would have to write a different word in the same word family. In the color category, she wrote red, and he wrote blue. Then she wrote green, and he wrote...turquoise. Yes, it was spelled correctly. Cognitively, he seems to be just as sharp as he was prior to the accident. He completely understands what we're saying to him. I've even spoken to him in Spanish a little, and he seems to get that as well. This is great news!
• Sam's speech pathologist has also been working very intensively with him. He works not just on speech with her, but drinking and swallowing as well. His therapist has been phenomenal, and Sam really responds well to her. Unfortunately, this is his last week with her, since she is getting very close to having her baby. We will miss her a lot, but we are grateful for everything she has done, and we are glad that she's leaving for a happy reason. In any case, speech and swallowing are some of the areas--other than left side movement--that seem to be plaguing him most. His voice is fine physiologically, and his brain knows what he wants it to do. However, the message is not getting to the muscles in the right way. This is all injury related, and it can be very hard to watch, especially when his voice was such an integral part of his life pre-accident. The very good news is that his brain just needs to make new connections on how to make the speaking and controlled swallowing happen. This brain has done amazing things so far, and we are confident that it will happen. As it has been throughout much of this process, this one's up to God and Sam to sort out, and we know they'll get it worked out.

Other than that, Sam's personality has been really coming through. He has an uncanny comedic timing, and frequently has all of us cracking up. We continue to be impressed with all of the incredible progress he makes, and the trach being out has really helped with that. Thanks for staying with us in prayer last week as we rode that wave all the way the shore. It was wild, but we all made it! For now, our prayer requests are:

• that his left side continues to recover and regains movement. This is not just for the obvious reasons, but it will also mean an end to the injection he gets to prevent blood clots. It's the only shot he gets as the rest of his meds go right into the feeding tube. Twice a day is two times too many for our preference, and we would love to not have to worry about doing that once he's home!
• that his brain finds a way to make those connections so he can start speaking and swallowing, and eventually eating. We know this will happen! Prayers for our constantly-tested patience muscle would also be appreciated!   

We love you guys and appreciate all of the support, whether it's through meals, gift cards, good thoughts or prayer. It is all appreciated, and we love you, #TeamSam!