9/18 - Sam's Journey - Day 281

It's been a relatively quiet couple of weeks since I've last written. We're slowly getting into the routine of school. In the meantime, we passed the 9 month mark of the accident. We'd love to have a solid week where there isn't something pulling Sam out of rehab for even part of one day, and it looks like that might happen the last week of September. Last week we had some more testing for school. As part of that, they want to see how he reacts when he gets tired or frustrated, and I'm interested in hearing what they say when we meet in October for the big meeting to make an official long-term school plan. Sam does get tired more quickly than he did prior to the accident, although his stamina has increased throughout his healing. He is still sleeping as I write this at 9am. (Naturally, as soon as I typed that, he woke up.) Sleep is an essential part of the TBI recovery process, and whenever he is able to grab some extra shuteye, we certainly let him capitalize on that. We have yet to see him react negatively to excessive frustration though, and I'm curious to see what he does for others when they test the limits of his patience. If they really want to irritate him quickly, all they'd really need to do is play a looped recording of loud, screamy children. That seems to be his trigger point!

Other than the school testing, Sam saw the neurologist about coming off the Keppra. They want to get some more info, EEG's and whatnot, to make sure there is no seizure activity, and if that's clear, we can start the weaning process. I'll keep you posted on that. He occasionally has minor headaches. They usually last for very brief bursts of time, as in less than a minute. You could almost time them with a second hand, they are so short-lived. My understanding is that this is pretty common with TBIs, and I only wish my headaches were that cooperative. 

Yesterday, Sam was able to spend some time with a good friend he hadn't seen in a very long while. It's hard to coordinate visits with his schedule and everyone else, and I'm so glad they finally had some time to reconnect. I'm hopeful that he is able to do that more frequently as time moves on, as one of the major pieces of his life his is working to recover since the accident is the social one. The majority of his social life revolved around school, choir and youth group, and having been out of those circles for so long has been pretty isolating for him. This is no way an indictment of anyone reading this! It's just one more piece of the puzzle we're trying to put back together. My latest comparison to the accident is that it's as if Sam had his arms full of laundry when the accident happened. Everything went flying, and ever since then, he's been trying to pick it all up and put it in the right place. A lot of people are helping him and handing him things, and he's got a lot of it put away where it belongs. There are still some of those elusive socks, the ones that always seem to disappear, and often the best ones, that he's trying to find. He's still looking, and he still has an army helping him. We know he'll get there!

We've had a couple of non-health struggles regarding the recovery, particularly in the arena of billing and insurance payments. Not surprisingly, when I had all kinds of time to call people this summer, there were very few issues I had to deal with. Now that I'm locked into the daily school schedule, everyone's made a concerted effort to get uppity. Things that were covered earlier in the year in their entirety are now being applied to a deductible that I'm reasonably sure we've satisfied about 72 times by now. (I'm not saying we've paid it, just that we can't owe it more than once.) On one bill, I did a little bit of digging. Without going into too much detail about 'who done what', someone billed us $14,000 for a month's supply of something (in our opinion, way overpriced*.) Insurance allowed only about $2,000* of that and called $700* our responsibility. (They paid 100% on an almost identical bill earlier in the year.) I just don't know what people who have really bad insurance, or those who don't communicate as--shall we call it 'persistently'?--as I do. The system is definitely broken, and it's virtually impossible to have any kind of significant medical procedure without exposing its shortcomings. We'll figure our issues out, and I'm just having a personal pity party. It's just exhausting, that's all.

One other main point of concern is happening this Friday. This will be a momentous day for a couple of reasons. Many of you may already realize that the 23rd is Sam & Sarah's 17th birthday. This would be a big day in an average year, and this has certainly not been one of those. We have much to celebrate. The other event of note on Friday, is that Sam will have the long-awaited ENT visit. Because what says 'Happy Birthday' better than having someone shove a tube down your throat to check out your insides? Regardless of the cruddy timing, we are looking to get some answers. What is going on there is what is affecting both his eating and vocalizing. These are two of the most important things in this child's life, so as you can imagine, we are eager for the results. To break it down, if there is no physiological damage, that means Sam is not yet re-creating the connections he lost in the brain injury and will continue to work in rehab to do that. If there is some physical damage, it will be determined what, if anything, will be done to repair it. After talking about it, Sarah asked, "So which one do we want?" And we have no answer. Neither is good, and neither is bad. It just is. And this is the source of my anxiety. 

Throughout this whole process, Jim and I have been relying on our strengths and letting each other take charge of the situations where those strengths will get the best results. For example, in an emergency situation, I'm your go-to gal. (See "Feeding Tube Falls Out," April 2016.) I'm also your "Don't-Mess-With-My-Kid-Or-It-Will-Not-Go-Well-For-You" person. (You know, just for future reference.) However, when it comes to procedures when we have this giant unknown hanging over us, Jim's the man. For example, when it came to putting the bone flap back in, a major medical procedure where we just had to wait, I had to be at work. If I had sat there waiting with him, I'd have been a nervous wreck. My mind just works itself over from one hypothetical situation into another, and then I'm no good to anyone. I'm already doing that about this ENT visit, and so it's a good thing I'll be at school all day, although you may want to make sure my students and coworkers have survived! We would certainly appreciate your thoughts and prayers that day, (the procedure is at 2pm) and that whatever the results are, that Sam continues to heal. We know he will get that voice back, and fight like hell to do it. (And to eat a cheeseburger that hasn't been pureed!)

That's all for now. I will post when we know something after our Friday visit. Have a wonderful week. Thanks for your continued prayers!

I don't have a lot of recent Sam pictures. I do have this one, however, of the wheelchair taking a break while he is at rehab. Olivia seems to be enjoying it, though.