It has been nearly a month since my last post. I am sorry for that friends, I was reminded tonight by a seven year old that it was time to post some pictures of Baby Oakes on the internet. It is now 10pm, and I have it in me to post a brief update.
To start, Oakes has been doing really well. We have been coasting along with lots of boringness surrounding up. However, this past Saturday Oakes hit a little bump. He was having problems breathing, and after a few failed attempts to calm him he was paralyzed. He was a bit fluid overloaded, and that pretty much started this downward spiral. We will lift the paralytic tomorrow and hope that he wakes up peacefully. Everyone agrees that this was a fluid issue, this has happened before and we know how to get Oakes back on track so no one is really concerned.
Last Monday we FINALLY got a one time clearance from the FDA to bring in the bio-degradable stents for Oakes' airways. It took weeks of back and forth with the FDA so this is a HUGE hurdle that we have overcome. Now, we are waiting to hear that our insurance company will cover this treatment. Dee Dee, the amazing woman that has been heading the entire stent operation at SLCH, thinks the insurance part will be a breeze. We hope to get the thumbs up from them this week. Next week, Oakes will go to the OR to have a dilation done and current measurements will be taken of his airways. Assuming that the insurance company is on board, those measurements will be sent to the manufacturing company for fabrication of the stents to begin. That should take 2-3 weeks, and then we have been told it will take a few more weeks to get the surgeon here. With this timeline, we will not have Oakes at home for his first birthday, which is the tiniest bummer, but maybe he will get stents for his birthday? While we are considering birthday party options we continue to stay positive, and thank god for the good stuff and the boringness.
That is the quick update, now here are some pictures!
Love to all of our family and friends, more details very soon!
He no longer is a thumb guy, he will pretty much take any finger he can get!
Consentrating and listening (to Oakes leg), while Oakes manages the plastic princess crown sliding down his face!
What a good day, visiting Oakes, being a princess and having a sucker!
Oakes lips are not blue from poor circulation, he had a sucker too, a blue one!