I, for one, am Happy, to be putting this year behind us! Let 2013 be better. Please. No more intubations, no more hospital stays for me, and let's get Oakley out as soon as possible, ok? Oakley is still intubated. He may be for several more days. He did an Extubation Readiness Trial yesterday, and didn't do amazingly. He did okay, but with his past of difficult extubations, even harder intubations, and his overall fragile state, they've decided to postpone pulling his tube and do some conditioning to work up to it. So, they will be changing the settings on his ventilator for a couple hours at a time, a few times a day, to what it would be like on CPAP or BI PAP which is what he'll be on post-extubation. He had a CT scan that came back saying he didn't have any disease lurking in his lungs to be causing his difficulty, but his lungs just don't have a whole lot of space to work in. He did have some fluid around his heart (which we found a couple weeks ago), but it isn't getting any worse and it isn't affecting heart function at this time. He had his MRI (to check for stroke/brain bleeds and to check for brain damage from the resuscitation) and it looked good, except for some extra axial fluid, which seems to not be constricting his brain, so they just plan to watch it.
Trevor and I have had more and more frustration over the little things here, and have looked into transferring hospitals. Unfortunately, there is a requirement that we stay here (or at a bone-marrow transplant center) for 100 days post-transplant. We would have to foot the bill for the move, and Oakley's not stable enough to move right now anyway, so we are just going to stick it out. We did get approval for medical transport on day 100, if Oakley is still in need of hospitalization-to go back to St. Luke's. We have already gotten our receiving doctor in touch with the insurance company to have the green light when February 7th comes.
We have received so much love and support from back home, that we get more and more homesick by the day. It doesn't help that we are so emotionally drained from dealing with the lack of continuity of care plans, but we miss home so much.
We have been so blessed by the people of the Treasure Valley this year. People we know and love, and strangers have reached out to us and given us diapers, gift cards, and words of encouragement. We couldn't ask for a better home to long for, and we can't wait to come back.
The Wallace Family is ringing in the New Year in a quiet hospital room in the Pediatric Intensive Care Unit at Seattle Children's Hospital, and we hope to never do this again. From now on, we want, nay, demand, Martinelli's sparkling cider in hand, and kazoos. It's just turned midnight in Idaho, and we want you all to know we wish nothing but health, happiness, and goodwill for your 2013, and we hope we get the same!
Love and Blessings,
Trevor, Samanatha, and Oakley
Also, my phone is broken. I should be receiving a replacement in the next couple of days, so if you've been mad that I'm not answering my phone or texts, it's not you, it's Samsung. That is also the reason no pictures have been uploaded.
ReplyDeleteHappy New Year to the Wallace Family! And, we'll be so happy to have you back, too!
ReplyDeleteLove you!
Grams