there thick & comfey
First year I could get my son to get close enough to Santa for a picture
We've had alot happened in the past week or so now .
My son woke up one night and was scared, couldn't speak or get any air in to breathe.
I tried everything I had for emergency medicines waiting for the DR to call and he was getting worse so I didn't wait to ran him to the closest local ER.
They took us in immediately when they saw us walk in and me carrying him.
They first found out they couldn't see down his throat it was closed and swollen. Not tonsils either. Stenosis of his upper airway. Low stats, heart rate under 50 and this wasn't an asthma attack!!
kept him on monitors with low O2s, etc. gave him high doses of steriods to get the swelling down right away,etc.
They did a sleep observation overnight and found out he's having clusters of mini stokes, causing seizures and lesions on the lower part of his brain. The lesions are not sending the proper signals to his body to tell him he needs to breathe when he's sleeping. We're so very proud of him, being such a big brave boy through everything!
They also gave him a couple new diagnosis's. The said he has centralized apneas and RLS which is rare in adults let alone children. Which need to get treated immediately or corrected up to the neurologists. First they need to do a surgery tomorrow morning to help his breathing issues first (of a couple or so) and fix the stenosis of his trek. Then afterwards healing time before the next route.
The DR thinks that all of this is contributing to his learning issues and behaviors issues and his IEP at school. They still think he may be somewhat high end Autism.
I had to get a seizure monitor for home to monitor his o2 and movements during the night.
So I haven't be online much nor will I be in the coming weeks.
he's out of school for a while hopefully he'll be ok to go back in Jan.
I can't enough concentrate long enough t relax and do any knitting or anything really.
We're not even thinking of the holidays either.
They did have their holiday pageant and my son was so scared and looked as though he was going to cry on the stage!! Beforehand he was singing Jingle bells and so excited...(he doesn't do well in crowds, just doesn't like crowds or loud noises and music, he never has)
then The principal and vice principal took my kids to a holiday concert with a couple of their friends this past weekend. Kinda expensive to.. the ticket stubs were $45 per ticket! YIKES! (my son wouldn't get in the pictures at the concert hall downtown)
I'm just glad he got to participate in some holiday festivies. He's going to miss a few but its ok as long as he gets well soon!
Thanks for the notes and sorry it took me so long to send out updates!
Thanks so much for all the thoughts & prayers & for all the support!
Hope everyone enjoys the holiday season!
Hope to be back soon! (will check emails but can't promise it'll be everyday so please be patient on hearing back from me
5 comments:
Oh goodness. Good luck you and your son are in my prayers!
Oh no! I'm sorry to hear about your son. I'll keep him in my prayers.
You all are in my thoughts. *hug*
Oh dear! My thoughts are with you! {{{HUGS}}}
Hugs, good thoughts and prayers. I don't know what else to say, it all sounds shallow and less than helpful.
Post a Comment