Man yesterday was an exhausting day. Skyler did very VERY well up until 2:00pm where he decided NOT to let mom help him with the video game in the child psych dept....thank goodness for the Neuro doc who saw the opportunity to jump in at the right time...I could feel my face becoming very red, and tho the thought went through my head "these parents don't mind a freak out moment...that's why they're here.."
So anyway, at 9am we were in the Dental clinic for some x-rays and pictures. And to talk to the oral surgeon, tho he seemed a tad bit busy it was the first time I felt "neglected" which isn't the case but I just had a list of questions I wanted answered with out being told to hold on and having to wait another 30min for an answer. It was busy.
Skyler will be there for at least 3 days, but from our past experiences, they don't discharge on Fridays or weekends, it just doesn't happen. SO that leaves Mon or Tues. 1 incision will be made on each side of his jaw bone to put in the devices, although they are going to try and do it from the gums on the inside of cheeks, but highly unlikely that will work.
The plan is to turn each day twice daily until the 15mm mark is met. He assured me its not painful, but I say BS! We will see.
The plan is to get Skyler a communication board, as he will have little want or ability to talk while in and even a few weeks after... :( this makes me very sad something I never prepared for, again, we will see. Feeding will be another quest. We have worked SO hard for these 13lbs in the past 16months that the thought of going backwards scares me. They say a feeding tube via the nose is a possibility if he cant seem to eat well, HA I dare 'em! At least 2 night s in the ICU then we get to go to the surgical floor and learn our thing and then we will be released. Hopefully able to get nursing care back in the home, we kinda got barked at yesterday for not already having it...because of his trach we really should have it, but really, I like NOT having them :P
But for the next few months, I cant seem to see much working the right way with out them...Please pray we get it and get some decent knowledgeable people in our home to help us!
And lastly we saw neuropsych. for some testing yesterday, (IQ and a few other things)- went OK, we do have to go back and do more. But our AR NP who's been following us for ADHD and anxiety increased his anxiety med as I described to her "Rainman" like behaviors...the Lil man LOVES music, and boy it better be 92.5 Movin' FM, (no I am not working for them, this is NOT a promo) but seriously...over and over and over.....So she just said that his body has adjusted to the teeny weeny dose hes been on and it was time to increase a bit I feel bad for having him on it, but he cant stop going in circles with out it.
That was our day.
It was a long one. And the whole time I was telling anyone who asked there "when was his surgery" I was telling them 2 weeks, well thanks to Erica this am, she reminded me that today was the 5th, and the 13th was next week!! EEK! :P
guess its time to get in gear and prepared. We are going to the zoo this weekend and maybe even the Children's Museum too so we can get all the fun we can before fun wont be in our vocab!
All our love
Casie & Mike
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