2/1 - Sam's Journey - Day 51

Good afternoon, #TeamSam! I would be posting more frequently, but as per the usual, we are in a holding pattern. There have been more really good baby steps, along with some backsliding. Here's the latest on Sam Happenings:

The Not-So-Positives

He cannot hold down his food much of the time. Apparently, this is a very common issue with TBIs, but at the same time, it's incredibly hard to watch. He's super skinny to start with, and a 16-year-old tends to have a lot more...output compared with the itty bitties in the rest of the rehab facility. Also, you would think that for a child who basically lives in T-shirts it would be easy to find replacements. However, we have to pick the stretchiest ones so we can get them on him without turning him into a human pretzel. Before anyone runs out and buys 200 stretchy T's, please know that we're doing fine with what we've got, and with some new ones I picked up the other day. (Thanks for that, friend--you know who you are!) As for the throwing up, none of the medically trained professionals are overly concerned about it, and so we will try not to dwell on it either.

His blood pressure and heart rate are a bit on the high side. When he's sleeping, he's fine, but at any other given time he's awake, moving, or being agitated (read "touched by other humans") those go up. They are still working with different meds to find the best way to control that.

He is still biting his lip. It isn't happening quite as much, but it's horrible seeing him cause himself pain. We are getting better at getting the lip out, but it's still a process. We know that in the grand scheme of things it's not the most critical issue going on, but we're hoping this stops, and soon.

And that's pretty much it for the not great stuff! On to the good stuff...

The Postives!

They are changing his trach again. I'm not sure if I wrote about this before, but some time last week, they changed him to a different kind of trach. (Previously, he had a Shiley, but now has a Bivona.) Without going into too many of the boring technical details, it was a good move since the new one, although the same technical size, is in actuality slightly smaller and more comfortable. Today, they're going to move him to an even smaller size Bivona. This is a great thing, not only for transitioning him to being decannulated eventually, but also for more effective use of the speaking valve. 

More and more, he is tracking with his eyes. We have been asking him to look at us or at things, moving them to different areas outside of where he is looking. Each day, he gets better at moving his eyes to his target. He's better at side to side than up and down, but he's getting there.

More and more, he is moving his body. The movement is still primarily on his right side, but the left side is starting to show signs of activity. What we are seeing on the left side is much like how we saw it beginning on his right, and we are very encouraged by this.

Finally, today, they will be starting him on a "wake up" drug. Because of his progress, they have decided to begin using Amantadine, which, evidently, has a lot of different uses. It's used to treat and prevent the flu, and is used in the treatment Parkinson's. It's also used to speed up the "waking up" process for patients in a coma or a vegetative state. It's somewhat odd for us to think about this process as Sam "waking up" since he definitely has sleeping/waking patterns. Sorry for the excessive use of quotation marks. Just trying to differentiate between the different types of "Waking up". (And my apologies to my friends who are sticklers about punctuation!) We're looking at more of a waking up of the brain's level of consciousness, and not just basic physiological functions. We have no idea if this will work, and if it does, how long it will take. I know what my gut is telling me, and it's been pretty accurate this far. But, rather than inviting bad juju, I'll just say that I think this is going to be a very big week, and I will leave it at that. 

Your support and love continue to amaze us. Yesterday, the blog passed the 200K mark on hits. I know the refresh button is the main culprit for that number, but we continue to draw strength from all of you. We are making and re-making plans on how to carry out the rest of life, and we are trying to maintain and reclaim some of the things that have (out of necessity) had to change during this time. School goes on for Sarah, and softball season is starting soon, Jim is deep into Solo and Ensemble accompanying, not to mention his regular job, and I will be returning to work soon. I don't want to give too many details on that plan since things could change in a heartbeat, but I know it is the right decision. I was at school very briefly waiting for Sarah to finish some choir business the other day, and I had some very meaningful and deeply touching encounters with students and co-workers. For a variety of reasons, it is time for me to return to the classroom, and I'm kind of excited about getting some of my own 'normal' back, whatever that may look like.

Thanks for your continued prayers and for all that you do to keep us going! God is good, and we have seen Him working throughout all of this--and you. We remain hopeful, knowing that He has some big things planned for Sam. 

One other note: I didn't mention that Sam loves to grab things with his right hand. In an effort to prevent him from grabbing at his trach and feeding tube, we've procured a variety of squishy things. This pic is of him squeezing the bejeebers out of Mike Wazowski from Monster's, Inc. I can almost hear Mike saying, "I don't believe it...I'm in a photo on a blog!"