Day 64

Between being busy with kids and the internet not working at the hospital, it's been a while between blog posts. (I've been reminded of this by numerous phone calls, emails and texts. :) This is going to be a looong post, because I have a lot of updates!


Holden is doing better today... We still don't really know what's going on with him, but he seems to be improving, and that's the important part. The doctors think the sleepiness and the respiratory issues are two different problems. The sleepiness and lethargy may have been caused by his sedatives, but the question then is what happened to decrease his tolerance all of a sudden to meds he's been on for two months? We're all stumped by that one. They've been tinkering with his sedatives quite a bit, and he was showing some signs of withdrawl this morning... We'll continue to try and wean the meds while keeping him comfortable, which is a fine line. We have a consult with neurology scheduled for tomorrow, and we'll see if they have anything new to add. They'll probably want to do an MRI, which isn't advisable with a pacemaker to begin with. He would also have to be re-intubated for the procedure, so we're looking at that as a very last resort. He's still having tests run as the doctors think of new things, and so far everything is still coming back normal. I'm not a fan of mysteries!

Respiratory-wise, he's doing much better. He's still on oxygen, but just the regular nasal canula support now instead of the Vapotherm. We don't have any ideas on what caused the edema either... So frustrating! His chest xrays still look pretty wet, so we'll continue to watch those pretty closely. Otherwise we just watch and wait, and hope that we can figure out what went wrong, so that we can prevent it from happening again.

Today he's been really active and alert, wanting to play and very happy. It's so exciting to see him awake, and I've missed those sweet smiles. He still tires easily, but he's a pretty happy baby in between. One of the doctors told us earlier today that we may never know what caused his setbacks... I know I should be satisfied and grateful for the fact that he's improving so much, but if we don't find out what happened, I'm going to be a nervous wreck for weeks waiting for the other shoe to drop again.

I was gone for most of the day yesterday, taking the girls back to their Dad's. I love spending time with them, and I'm so thankful that we got to spend some of the holidays with them, but it's always such a sad day for me when I take them back. :( They had so many gifts and bags to take back that even my big Mom bus was PACKED. I'm not sure how I even fit kids in there. I think they had a really good time while they were here though... I tried my best to take them to do something fun each day, so they wouldn't think about sad times in the hospital when they remember this Christmas with us. We went shopping during the day on NYE (at Grapevine Mills mall- I do NOT recommend shopping there on a holiday to any sane person. It was insane!!), then that night we took them to a hotel with a view of downtown Dallas so they could watch the fireworks. They felt very fancy! (Holden had his own little party with the nurses and doctors up here in the room... I'll post pictures.) The next day, we went back to Grapevine Mills to eat at the Rainforest Cafe. We didn't get to eat there the day before as there was an hour and a half long wait... They absolutely loved it. The food was decent, not great, but watching the girls have such a good time made it worth it. Trent's mom and stepdad got us tickets to the ICE show at the Gaylord as a Christmas gift, and that was the highlight of their vacation I think. It was a last minute suggestion, and I'm so glad they thought of it! The girls were fascinated by the whole thing, and talked about it the rest of the day. A giant man fell on Rylie at the top of the slide, but even that didn't dampen her spirits. :)

So that's what kept me too busy to post this weekend... I hope we didn't worry anyone too much. :) I'll put up some pictures later this evening, and maybe that will get me out of trouble?