9/24 - Sam's Journey - Day 287

I know that many of you are waiting news of the ENT exam yesterday, so here it is: no physiological damage. This is really great news! Once the scope was in, it didn't take very long at all. The doctor had him make sounds, and they watched how his vocal chords moved as he did it. Jim was with him and got to see the video as they did they scope. He said that outside of it being an exam on his own kid, it was really intriguing. He could see the chords on the right reacting when he made sounds, but the left ones were really sluggish. From Sam's perspective, he said it wasn't as bad as he expected it to be, and that it just felt "odd." I think the worst part was probably not being able to eat for most of the day. Here's a pic of me bringing him home after everything was said and done. As you can tell, he is none the worse for wear.

The bottom line is this: the physical capability to regain full use of his vocal chords and swallowing mechanism is there, and we are back to the waiting game while Sam works to make those connections again. It's frustrating to us--and probably him--that it's taking so long. We still feel he will make a full recovery, but the wait is excruciating. We've already established that I'm not a good wait-er, and how my mind goes into overdrive during the waiting. That's when "what-ifs" go on the attack, and doubt creeps in. After the last 9+ months, you would think I would have learned by now that none of that is helpful. Sadly, not so much. I do know that Sam will not quit working until he is satisfied with where he is, and his standards are insanely high. He and God are on this, and I'm just going to stay out of their way so I don't mess up their plans.

Thank you all for the kind words and prayers as we maneuvered through our day. They were much appreciated. You've still got it, #TeamSam!

Other than that, it was a pretty mellow birthday. We had dinner together and all four of us were together and bonded over the new TV version of The Exorcist. Make of that what you would like. While it wasn't overly exciting by some standards, it was extraordinary that we are able to celebrate this day at all, considering everything that has transpired. For all of you who took time to make their day special with messages and gifts, thank you! All things considered, it was a very good day.  

To wrap up this entry, I'm including some pictures that Sarah took. As you can tell, he's still a big (not) fan of selfies. Peace to you all!

                          

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.

9/3 - Sam's Journey - Day 266

And just like that, the school year has begun. So much has happened since the last time I posted. There is a lot of good stuff happening, so I'll try not to miss anything.

In my last post, I talked about the school meeting, and we were waiting on some decisions to be made. Those decisions did come through, and I'm happy to say that they were exactly what we were hoping for. We wanted Sam to continue his rehab, because according to the research he is coming to the end of the time where his biggest strides in recovery will be. (Even though we have seen that Sam has refused to work within the confines of pretty much everyone's guidelines of what should have happened, we don't want to lose this momentum.) In the school districts here, there is a homebound program for students who are unable to be at school for health reasons. However, there were some significant challenges with Sam's situation because of where he is in rehab. I won't go into all of the behind the scenes details, but thanks to some incredible support by the administration at our high school, Sam will be able to continue in rehab for a full day, and still receive the homebound services from our district. This means that as of this past Thursday, SAM IS OFFICIALLY A STUDENT AGAIN! He is currently working on finishing up 2 of the 4 required classes he didn't finish last year because of the accident. He has actual homework this long weekend and is probably only one of about seven students in the state over the moon about this fact. I asked him if he was happy to be back in student mode, and he said, "Oh yeah!" We're keeping tabs on how his injuries impact his learning, and we will have another meeting to evaluate where he is now and set up plans on where he is headed. 

Sam doing homework. He's baaaaack.

On Friday, Jim went to the monthly care conference at rehab. When I got home, he asked if I had read the notes from the meeting. (Um, no. Teaching?) By all accounts, Sam has retained his rock star status, and is working on meeting the goals they are setting for him. There is something that he's been taking to rehab that he should not bring any more:  his WHEELCHAIR. He is walking everywhere while there, and they continue to work on transfers and just a greater move to independence.  The only time he's using the chair at home is when he's eating because it facilitates the whole process. At rehab, they're also working on steps and redeveloping a more natural gait. All good news, people!

Medically speaking, he's had one appointment and has a couple more coming up. On Thursday, he had a follow-up with the nephrologist. If you've never had the necessity of working with a kidney specialist, our experience has been that they operate on a plane of consciousness that far surpasses the average Loeffler one. If you recall our adventures in Kidneyland in December and January, Sam was tearing through all kinds of dialysis equipment, and managed to baffle even these titans of higher-thinking, and decimated just about every treatment they tried with him. However, the doctors eventually prevailed, and got his unruly kidneys back in line. At his last office visit, the docs didn't do too much, and frankly Sam's kidneys are just dandy, thank you very much. With all of the other recent interruptions to his schedule, we were viewing this appointment mostly as a source of irritation and were going to insist that it be the last.

Because I'm at school, Jim is pretty much stuck with all of the extra doctor visits and whatnot, and the texts started rolling in shortly after the appointment time was scheduled. "Blood draw." "Urine Sample." "Losing Patience." Fantastic. As you might imagine, teaching class while all of this other stuff is going on is not tremendously easy to navigate. I waited for the bell to ring to end class and checked my phone again, only to read texts in a much happier tone. Apparently, the doctor came in and was so blown away by the progress Sam had made that he couldn't believe it was the same kid. Later on Jim told me that he kept going on and on about the faith we had that he would get better, and how we never gave up. In the end, Sam's kidneys are indeed (clinically) fine, and we are now released from nephro. But in processing all of this, maybe the reason for the visit wasn't just a simple run-of-the-mill follow up. What we considered an annoyance to us may have had a completely different purpose. This doctor hadn't seen Sam since early Spring, and for all he knew was still immobile, non-verbal, and in a state of semi-renal shutdown. His reaction was unexpected and completely out of character. This boy's incredible recovery continues to astound the same medical professionals who had their doubts about any quality recovery. (And, that, I am guessing is the greater reason for this visit.)

As for the other upcoming visits, next week, he has a visit with a neurologist who will evaluate whether or not he can come off the anti-seizure medication he's been on. We're hoping for a yes, since we've seen no evidence of seizure activity, but we'll let the experts weigh in on that first. And on the 23rd, he has the long-awaited ENT visit. We are hoping to get some answers about why he's not making as much progress on swallowing and suction as we'd hoped. Good, bad or ugly, we just need some answers.

Finally, it's good to mostly be back in a schedule. We're not quite there yet, for a variety of reasons. The first few weeks of school are always grueling for me, and consequently for Jim whose schedule also picks up in the fall. Sarah started classes at Senior and is settling into her routine. We may be starting up the meal train again if I can find the time to figure out exactly what we need and when.  We're super busy over here, and we know you are, too. Thanks for your continued prayers, and for taking the time to catch up with what's going on here. Peace to all of you as you embark upon your own fall adventures!