1/25 - Sam's Journey - Day 44

Today was Sam's first official day of rehab. Jim was here for all of it, and I'm taking night shift and day 2. Today, Sam got on what I think is a called a tilt table. They start him off in a lying down position, and then raise him up to pretty much standing. While we're starting, the big goal was to see if he can maintain homeostasis, which they measure at this point by heart rate. They don't want it to go lower than 90. Sam managed to do that successfully for 10 minutes, which was a great start. I thought it was pretty excellent since I sometimes get a head rush after getting up off the couch. After that, he had an ENT appointment at Children's, so back in the ambulance they went. They are talking about changing the trach to a different one than what he has, but they're looking at having it out completely shortly after him being done here, if not sooner. That's all contingent, of course, on him being able to tolerate each step along the way of less and less support, but the one thing that has been consistently going well has been the trach collar trials. He has been off the vent for quite a while now, and has only needed a little oxygen twice to recover after big coughing spells. That's really exceptional news, and we're hoping that things will continue moving forward on that.

There have, however been a couple of minor setbacks. One is that he definitely has his nights and days mixed up, which is awful for therapy. It's exhausting stuff, and if he goes into it with little to no sleep, he just doesn't get as much out of it as he could. Also, he is losing weight. For those of you who have not seen him in several years, he is not a big kid to begin with, and it's hard to watch him lose what little mass he's got. Complicating that is that over the last several days, he has been throwing up during or after coughing strenuously. Today was worse. After a super first day, he got settled into bed and promptly projectile vomited everything. (Sorry. Guess I could have given you a gross factor warning.) They've stopped his feeds for now and have put him on IV fluids and Zofran to prevent him from throwing up. They aren't exactly sure what's up, but they're checking into a couple of reasons why this might be happening. Finally, the last thing isn't a super huge health risk, but it's incredibly unnerving. He's always been a teeth grinder, but ever since the accident, he will not unclamp his jaw. Lately, he's been catching his lip in there and will not let go. He's got the relentless bite of a pit bull. It's really hard to watch, and we're trying to keep him from doing that. Hopefully, we find a solution soon.

Tomorrow, he has more rehab, and we're hoping that he has a good, productive day. Prayer requests for today include:

• A peaceful night's rest so he's energized and ready to go for tomorrow, and sleep for the rest of us as well
• A productive day of rehab tomorrow
• That he stops biting his lip and/or we can figure out a way to get him to unclench his jaws of death when that happens
• That we can figure out how to keep his food down
• That he can get this trach out sooner rather than later
• That little Aaron can overcome an allergic reaction to an antibiotic for a cerebrospinal fluid infection
• For a quick return to normal from the massive snow all those in the east just received
• Thankfulness for good test results for a friend

Thank you, dear friends! We are grateful to and for all of you!

Today, I'm posting this in consideration of all of the time lately we've been spending listening to the Billy Joel channel on Sirius XM. Also, it's been almost a year since Sam sang this at the school's dessert show which is right around the corner. I posted it on my Facebook page close to the beginning of this journey, but I was finally able to listen to it the other day myself.

***It doesn't seem to be working as I originally posted, so here's the link:  She's Always a Woman