Max just spent the past two hours in quite a state. It started as a cry, that soon turned inconsolable, with thrashing of his body, profuse sweating, and miserable crying.
Of course it hits right at medicine time, when I can't open his stomach tube to let gas out. Of course it hits right at bedtime, so I don't know if he's really in pain, or just plum tired.
He's had a long, eventful day. A good day by most accounts. But, when the evenings end like this, it's just all too real that he's still recovering. Right now, his guts are still trying to work. And, we've got to add a physical dependency to having his rescue seizure medicine, Ativan. Max was on Ativan while inpatient, because he couldn't take his regular seizure medicine, Sabril, through his gtube for over 2 weeks. The Ativan helped cover the Sabril. Only problem is, he can't kick this last little bit. If we go more than 24 hours without it, he's sweating, and writhing, and up all night. Some nights there is moaning, some nights it's screaming. I finally gave in and admitted that it was going on to his doctor. I wonder, why do I have such a hard time telling the doctor that this wean didn't quite work? I think I didn't want to be told that we still had more recovery. I didn't want to be told that it is likely that we will only see Max awake every other day or so. Because, now we have to give Max the Ativan, and taper up on his sleep medicine, to taper down off of the Ativan. Such a balance...such a delicate balance.
But, I didn't start this blog post about Ativan, and withdrawals. I started this blog post earlier today about a very special event. Today, Max started third grade at school.
Max is a homebound student, meaning the school district we live in, sends a teacher to our house twice a week for an hour each visit to instruct Max on a version of what his classroom is learning. That started last week. But, three weeks into school, and we still hadn't made it up to Max's elementary school to meet his new teacher, or to see his friends.
With the recovery, and sleepiness...and sleeplessness, it's been pushed back several times as to when we would make it up for this first meeting. This morning, since Max slept so well, and woke up feeling pleasant, I was determined to get him up to school!
He was so excited! I put on his new yellow tie-dye school spirit t-shirt that a neighbor and fellow parent purchased and dropped of while Max was still in the hospital. He was moving around so much, I didn't get a single photo of him that was clear on the way to school.
Third grade, here he comes!
He had a great time visiting with his class. I brought his computer for him to visit with the class, but he held his hands close to his lap, and just listened. He liked all their questions, and was just taking it all in. They had great questions again...a lot of the same, "Why is he in a chair?, does he always sit in that chair?, why does he move so much?, how does he eat?, why can't he talk?, how old is he?, why does he get so sick?, how many surgeries has he had?, does he need help to go to the bathroom?, will he ever get better?, was he born like that?, will we get to meet his puppy?, does he like opera music still? does he like yellow still?"...all questions I field as best as I can without laughing, or choking up. They're all great questions, and questions I'm sure I would have had in third grade, if I had had a single kid like Max ever in one of my classrooms. I try to remind myself that not only is this great for Max, but it's incredible for these students to encounter someone so different than they are physically, and developmentally, but to see that he is so very like them in so many ways.
We ended our time with Max telling his new teacher "I want to listen to music.", and she turned some on. The kids each got up and washed their hands, then one by one came through a line and introduced themselves to Max. They said, Hi Max, I'm ---. Sometimes they would ask him questions, or they would ask me. But each one of them talked to him directly at least once.
Max also shared his first assignment with the class. One they all did as well, and they enjoyed reading his answers. And they thought it was extra cool that he had finished all the sentences by using his nifty computer.
(This assignment took him over an hour to finish, because he did it all with his computer. He chose the words, and the colors to use. I did the cutting out and pasting, because after he finished all the hard work, he fell asleep for two hours!)
It was a great first day of third grade...and he got to see all of his other teachers too, 1st grade, 2nd grade, Special Ed., support staff, and the office staff. Although, he missed seeing his Pal the Principal.
We came home and he had a few minutes before music therapy, where he got to play Mrs. Laura's super nice fancy guitar. We think he really loved it...maybe we need to find him a kick around guitar so he can play it...with his feet, as it's his preferred way to play any instrument.
As Mrs. Laura was leaving, Miss Rhoda was getting here for school. He was a champ and did well all through his lesson. And at the end was only a little tired, but didn't go to sleep.
I think it all caught up with him tonight. He was overly stimulated I suppose. He's finally asleep now, thanks to his sweet nectar, Ativan. Boo...addicted to Ativan. I'm hoping we can have a happy boy tomorrow. He has a follow-up with surgery in the morning, and then speech therapy in the afternoon. I hope he's awake for the speech therapy at least. Recovery is a bumpy road sometimes. And it sure doesn't end when we're discharged from the hospital. He's been home almost 3 weeks now, and we're still trying to figure out all the pieces to get him back to his normal. We'll get there. He'll do it in his own time, like he always does. Until then, I could take an extra serving of grace and patience to make it through.