Day 28

The past 24 hours have been a roller coaster of sorts, with all of the ups and downs... I'll start with the ups first. I met the girls at the mall yesterday for lunch, and then we had a really good time shopping for their Christmas presents. (I know we jumped the gun a little bit, since it's not even December yet, but already have some Christmas money burning a hole in their pockets. :) I had fun, and I loved spending time with my two favorite girls, but I can't say it was really a relaxing kind of day... Post-Thanksgiving shoppers are vicious, and most of our time was spent getting out of the way. I'll have to remember this experience next year, so we don't make the same mistake again. It broke my heart to say goodbye, since I know I won't see them again until Christmas... I was so sad to see them go. It's always hard to send them back to their Dad's house.

We had some visitors from Emory yesterday evening when I got back to the hospital... They picked up some prescriptions for me at our pharmacy, and then bought us dinner. Thank you Jason, Amy, Tracy and Rachel! :) My cousin Becky had also come to visit during the day... I didn't know she was going to be here, and I'm so sorry I missed her. She brought a bag of goodies and a really sweet card... Thank you too Becky! We have been so incredibly blessed by all of our family and friends...

Now the downs... (My weak-stomached friends should stop here, as most of the details are disgusting. I try to clean it up a bit for retelling, but it's still pretty gross.) Trent kept telling me that everything was fine when I called to check in yesterday, but when I got here he told me he had lied... It was a rough day. Holden has been throwing up green bile (massive amounts of it too) for the past two days. We're not really sure what's causing it, but they're trying different medications to get the bile production down. We think he either has a stomach ulcer, too much bile- since his feeds are going straight to his intestines, nothing is passing through his belly, or maybe a bug? I don't know, but I hope they figure it out quickly... This poor baby has enough to deal with without puking added to the mix. Another concern is at the other end... He had to take some meds to help his bowels move before, and now they're really moving. The problem with that is that one of his blood pressure/heart medications is going through his NG tube, and since he's pooping it all out, we're having trouble regulating his blood pressure. We can compensate for that by giving him a different med through his IV, which we are, but there's no way to know how much of the medications he's actually retaining. We're trying our best to switch him to all oral meds so we can get IV's out of him... Every line going in him is another infection risk- Little things that make a big difference.

He's also been running a fever off and on since yesterday. The drain in his belly started draining a milky looking fluid this morning, which is different from the clear fluid he's been putting out. We don't know if it's a problem with lipids maybe leaking, or if something's infected in there. They've sent out cultures, and hopefully we'll get that figured out soon too. We're praying hard for NO infections... He's still too weak to fight anything off, and a serious infection could affect his ability to get a transplant. It will also set us back as far as his vent support goes... We need to be trying our best to wean the vent settings and at least try extubating him, so that we can more clearly see what happens in his heart without the vent. We're nowhere near that point yet, but working towards it... We need him to stay well!

Thank you all for the supportive comments and messages... I'm still surprised by how many people are keeping up with and praying for our little boy. I don't even know a lot of you, but your support and prayers are ALL appreciated. Thank you!