He made it!

Well he is done, about an hour ago they called us back into the ICU he's doing great! Ok, he's very drugged, no room to be doing bad. It's very weird every other surgery, no matter the extent he has been up and out of bed and we have spent most our time trying to keep him in bed to rest. This won't be the case tonight.
It looks alot better than I expected, not sure what mike thinks, he's pretty quiet tonight. But there are 2 incisions on each side of jaw line, and then the "screws" stick out at his chin, there will be scars but not severe ones. We should be starting to turn on Friday. it will be 1 and a half turns each day. The dr went ahead and put in a 20mm extractor just incase we need to go that far, but at this point with weekly visits and daily turnings, our days will be busy!

Sounds like the 10 and younger age ban is off only IF the child shows absolutly NO sign of cold fever or cough (duh right?) So hopefully Seth will be able to visit us on Saturday when Skyler gets out of ICU.

I have some pics for here, but the computer I have doesnt like my disk, its not formatted correctly, and I dont think i know how to fix it with out losing all my pics. SO once we get that figured out I will post them, he looks like a chipmunk with fangs....odd i know.

But gotta go Mike probably is going to want to eat before he heads to pick up Seth. He's in Skyler's room right now sleeping, or trying...we have a little teeny weeny roomy, who is also trached, it's going to be a long night between the two heaters and sat monitors....ugh.

~Mike Casie and Skyler

Just got a call the dr is coming to talk to us soon. We may be able to see skyler in an hour or so.

Skyler just went into surgery its 11am he was a little nervous. Now we wait. It will be 3 to 4 hours but well have an update in an hour or so.
~mike and casie

Skyler's Thoughts today

A "Hospital Vacation" you ask, well I was trying in so many words to explain to Skyler why he wouldn't be seeing Dana for a while or going to school, and the word Vacation came out of my mouth, easy out but I KNOW it was the wrong thing to say :)
Like Mike said, I've ruined the meaning completly!
But even this short video got him all anxious.
Talk to you all tomorrow! Mike and I are starting to get anxious and nervous I cant begin to tell you what I am feeling right now besides for some reason I feel like I am hurting my son more than helping him. Hopefully that feeling will go away SOON!
~Mike and Casie

Skylers surgery tomorrow! We have to be at Childrens at 945 means his surgery should be 1130 or 12. And then its a 4 hour surgery.

The count down says 1 day 26 hours...YIKES!

We are doing well, Skyler hasn't asked about his surgery anymore, I think he forgot :) We had a pretty good weekend since it was Mother's Day my family took me to the Mom & Me at the Zoo day at Woodland Park Zoo in Seattle. We had some family friends and their kids come with, it was fun and a beautiful day! Skyler really enjoyed him self, Mike and I both said it was nice to see him be so happy because we both can picture in our head what Wednesday night and beyond will bring!

Still no time's yet for surgery, I am anxious to know if we have the bit of the morning with Seth to spend on Wednesday. Probably not likely, never is but nice to hope. We are very thankful for my parents and sister who are taking Seth for the times before and after daycare, it means a lot to us to have such great support. And I want to also thank Jessica for asking if we need anything, again Your a great friend! I owe ya!! Its nice to know that when we need to have our most attention on Skyler that Seth is safe, loved and cared for and probably wont even miss us for those short times! Makes it a little less stressful!
Speaking of Seth, well he had this "bark" of a cough for the past few weeks, and I didn't run him into the Dr. to get check out due to the "SWINE FLU" freak out...no I never thought he had it, i just didn't want to be one of those! But on Sunday I took him into the Urgent Care just to be looked at, because they are doing health checks at the front door at Children's and we don't want Seth NOT to be able to visit his brother. But Seth was dx'd with a sinus infection..ugh! Poor teeny nostrils!

Anyhow...got a new camera today mostly because my old dying one fell outta the durango yesterday, but now its nice to have a good reliable "FAST" camera for Skyler's stay down there!

But wanted to post some pics of Skyler before his surgery.

Isn't he just precious?!!

Pre op appt May 4th

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