Christmas was great. It was so nice to be home celebrating together. We had a nice dinner, played games with the kids, and just relaxed and hung out. Low key and absolutely perfect!
B is doing pretty well at home. He seems much happier and more contented. He smiles alot and has started cooing a little too. It's awesome to be able to interact with him now! A nurse from VNA comes every other day to take blood for CBC's, check his vitals, and monitor his growth. He's got a long way to go but is up to 7 pounds 14 ounces now. It's crazy to think that he is almost four months old and still wearing Newborn clothes -- such a little peanut!!
We're adjusting pretty well too I guess. Its definitely exhausting though. Right now, I'm the only one who knows 100% of his care so it's a lot of pressure. Tim is learning more and more and trying to give me a break but once he goes back to work he won't be here to help much. I'm trying to find out if B would qualify for any kind of nursing or respite care to help me out but it's tough figuring out where to start. Our pedi said maybe the hospital social worker, who said they can't help since he was now discharged and recommended we ask Early Intervention but we haven't even heard back from EI since B's referral. Frustrating! I'm sure I'll figure it out eventually.
The coming weeks will be pretty busy. Brady has transfusions 2-3 times a week, IVIG weekly, and an average of two other medical appointments a week. He is followed by surgery, lung center, hematology, feeding clinic, nutrition, developmental clinic, cardiology, and neuro & growth...basically, a small army of doctors and specialists.
On Jan 3rd he is having a clinical swallow evaluation. I'm really looking forward to it because it's the first step toward allowing him to start back on oral feedings. He has not had a bottle since the beginning of November. I miss the normalcy of snuggling my baby and feeding him his bottle. I really hope that working with the speech pathologists in the feeding clinic can get him back on track but there is a good chance he will never take a bottle and could take a very long time to learn how to eat and drink anything at all. Only time will tell I guess. I'm also hoping the swallow study will show what is going on with his reflux. Supposedly the Nissen wrap stops him from refluxing but I can definitely hear it happening still and it seems to be occurring more and more frequently. Last night he had a pretty scary episode where it seemed like he was trying to vomit (which he can't because of his nissen) and it caused him to have trouble breathing. His O2 sats dropped and he had some color change. The whole thing lasted about 8 terrifying minutes. When I called the hospital and spoke with the pulmo on call he didn't seem too concerned but he isn't B's regular doctor and doesn't really know B's complexities so I'm anxious for Dr. Sheehan to get back from vacation. I think more needs to be done to manage his GERD still and that taking him off all but one reflux med was a mistake. Guess we'll see what he thinks!
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