Day 49

I am constantly surprised and amazed by the generosity and kindness of our friends, family, and people who know us through them... We have been incredibly blessed by all of them! Our friends Jason, Amy, Tracy and Rachel came up here last night, and they brought a mountain of Christmas presents with them. There were goodies for me and Trent, some from people we haven't even met, and they were kind enough to save our gifts from the White Elephant party we weren't able to attend. (I was ordered to put pictures of those gifts up on the blog, but I haven't gotten around to taking them yet... Sorry, Amy.) So many people sent gifts for Holden as well, and again we were amazed by how many people remembered him this Christmas... Thank you all!!! I'll take pictures as he plays with each of them, so those of you who sent gifts can see him enjoying them. :) The only thing he's gotten so far is the Grinch, and I think he was more terrified than impressed. I'm sure he'll eventually love it though!

He's made some progress today, although we're still having issues managing his pain. We switched him to the heated oxygen nasal canula this morning and got him off of the Vapotherm... So far, he's been a champ! His sats have stayed in the high 90's, even when he's crying and throwing up. He just keeps surprising me by surpassing every goal set for him... He's such a little superhero!

We're still having trouble getting the feeding tube down far enough in his intestines. Instead of migrating where it needs to go, it's curling up in his stomach. He'll have to go down and have it placed in the lab tomorrow. Until then, he's off his feeds, and his PO meds are going straight into his stomach. He's still throwing up, though not as much volume as he was previously, and he still seems to be in a lot of pain. His lipase count was in the 600's this morning, up from the 400's yesterday. His poor little tummy... If he didn't need his pancreas, I'd tell them to just take the stupid thing out so he can feel better again!

So that's pretty much the way it goes in here... Big steps forward in one area, and big steps backward in another. He's doing so well from a respiratory standpoint, but the pain from his pancreatitis keeps him from feeling good with his progress... That pain prevents us from holding him and playing with him like we'd like to as well. :( I'm praying hard that he starts feeling better this week... He has a few Christmas presents to unwrap!

Playing with the Grinch... Does he look scared?? :)