Micah is feeling much better. He is closer to his normal, flirty self. I've missed the full-face smiles so much and it's wonderful to see him happy again.
Today it was 5:00 before the GI doctor came to see Micah. I made a decision at 2:00 that I was sick of waiting. The resident on the floor agreed with me and we increased his feed. He told the GI doc that's what we were doing and he gave a verbal okay. At 3:45 I met with someone from Patient Care to express some of my concerns with the delays and inefficiencies we've experienced while being here. At 4:15, Micah's GI doc (not the one on service in the hospital) dropped by. There has apparently been discussion about what is potentially causing Micah's feeding discomfort. They think there *might* be a semi-obstruction more downstream. There's no plan to test for that at this point because it's another trip to the OR. So we're going to try to increase his feeds to the volume he needs and take him home. If we hit a point where he's not tolerating the feeds, then an endoscopy that goes all the way through his intestines is the next step.
Micah had a great night last night (he only woke up twice). But... he just woke up pretty uncomfortable already and it's only 9:00. I'm not sure that we should raise his rate again tonight (the plan was to up it every 8 hours, so he's due for another increase at 10:00). It's tough to know how much to push him. If we are able to get him up to his necessary rate tomorrow, then we could likely take him home on Thursday.
Down syndrome stuff: I mentioned in yesterday's post that individuals with Down syndrome are much more likely to get leukemia than the rest of us. Someone posted a comment (anonymously) which I think you all will find interesting so I'll post it here on the "front page" since not everyone reads comments:
However, kids with Down syndrome also have a much higher CURE rate for leukemia. They also have a much lower rate of other cancers. For example there is only 6 cases of lymphoma in people with Down syndrome... in the last 30 years. They very rarely get anything other than leukemia. When they do get leukemia they respond better to the medication. There is something on the 21st chromosome that helps them fight cancer. Researchers are looking at people with Down syndrome to find the cure for cancer. So while they have more of a risk of GETTING leukemia, far more of them BEAT it than typical kids. 90% for typical kids vs 98% with kids with DS for ALL... and 85% for typical kids vs 95% for kids with DS for AML. I think it's a trade off that's worth it. :) More likely to get it, but also more likely to beat it. Not to mention, helping find the cure for cancer.
I wasn't trying to be negative when I pointed out that little Down syndrome tidbit yesterday (just adding a small fact). I very much appreciate the positive attitude contributed by the person who commented. The 21st chromosome seems to possess a lot of interesting traits. Other research has shown that individuals with Down syndrome may show symptoms of Alzheimer's at an earlier age. I'm so glad to hear that people with Down syndrome could potentially help develop a cure for leukemia and Alzheimer's. But I have to say, I just feel that our little guy has been through so many health-related issues already... please, God, don't let him get anything else.
Suspense by Rachel Dylan
1 week ago