It's 4 am. Really... it is 4 am. I have not been to sleep yet. I can't sleep.
Tomorrow my sweet baby boy starts school. Real school, not preschool. I am nervous and excited and nervous and nervous and nervous. LOL!
This past year has been really hard for Josh and our family. This past 5 months have been the hardest I have ever gone through with Josh.
Tomorrow I will be taking him to school where for the first time in his life, I am trusting someone else to regularly take care of his medical needs. I am a bit scared. I know how much it takes to keep him going day to day.... and the thought of having someone else doing some of this makes me nervous. What if they forget his meds? What if he is having absence seizures and the teacher doesn't notice? What if something happens with his tubes?
The list goes on and on.
I have had some hard conversations with doctors starting this past march. In march we had the 'what does the future hold for Josh' discussion with GI, Dysphagia and Neurology. That was tough. But nothing could prepare me for what happened starting in April when he had a neurological decline. Suddenly I had conversations I NEVER thought I would have. Conversations where the term "Quality of Life" comes up. Conversations where we had to discuss a major surgery to keep his GI system from shutting down completely. Conversations where Doctors were at a loss as to what to do to help my sweet boy.
I would never have guessed even several months ago that we would have to do an appendicostomy. (Heck I had never heard of it before). I never thought we would be doing the last ditch effort to help Josh. It still floors me now that he is only 5 years old and we have already had to do the last ditch effort to help him. He has so many years of life to go and we are already doing the last thing they do when NOTHING else works?
But so far 2 weeks later, it seems like we might have found a good way to improve his quality of life. The flushes are working and when we had to do a emergency x-ray at the local hospital ( I was NOT driving an hour to Primary Children's) his GI tract looked better than it has ever looked. No build up of stool anywhere. So (knock on wood) we might be finally able to breath a sigh of relief.
And it was no easy thing to watch Josh suffer and be in so much pain. It was heart breaking. I got teary eyed (no loud sobs though!) so many times watching him recover. We made the decision to do this surgery and since ultimately it's up to us, not the doctors, I can't help but feel a little guilty that he had to go through that. I know it was needed and we would never have done something so major if it wasn't for the fact that there was alot of confidence in the surgeon and confidence this was the right choice. But it was still the hardest thing to ever watch.
Now as we settle into our new routine of doing nightly flushes that take up to 3 hours from start to finish, and now have 2 tubes in his stomach to take care of nightly...... I have to remind myself that Josh would not be here with us if he didn't have these procedures done. It's as simple as that.
Now wish us luck on our new adventure of school. We might need it.
(PS... I will be doing a post on his surgery and hospital stay as soon as he is settled into school and I have a free minute to sit down.)
Biopsy and Fun
3 days ago