Tired and Uncomfortable Still

This photo probably accurately captures where Job is at right now, poor guy. He's slightly more calm and interested in the world again, but still tired and uncomfortable.

He is doing better, but he has a long way to go before he's back to himself. He's sleeping for slightly longer stretches (2ish hours at a time) and he occasionally lets us put him down for a few minutes. He'll even attempt to play with his toys sometimes. He's more consolable; his body is less rigid and tense and he'll snuggle up to us. He's only vomiting twice a day now, on average. These are all improvements.

Wednesday's upper GI scope gave us the diagnosis of "severe acid reflux". Thankfully, it seems as if reglan, which we started Monday morning, is doing it's trick, but we have a full gastrointerology work up next week. This is a totally new area to us and so I have all sorts of questions.

I assumed he had a cold since the big boys and I got sick last week/through the weekend, but he didn't have obvious symptoms like we had... but we weren't sure. But by Tuesday evening it seemed as if the balance was shifting from (what we know know was) agonizing reflux pain to common cold discomfort with more teething pain for good measure. That's still where we are now. His pediatrician checked his ears today, but there's only a bit of redness, no obvious infection. Job's down to 79% oxygen saturation on 1 lpm of flow (which is a decrease of 6-7 points from where he was last week, after we turned him up to a full 1 lpm), so this cold is certainly affecting his respiratory status. (But YAY for having oxygen and not being in the hospital!)

Sadly, his cath is pushed out 4 weeks from today because of this cold. We knew that was likely and of course we understand and agree that we don't want to mess with anesthesia and ventilation when he's sick/recovering from a cold. But it is disappointing that he got sick at all (why can't we keep germs at bay?) and that we have to wait to know the full extent of his cardiac situation. I'm also very sad that Job can't travel and needs me to stay with him through the weekend, so I'll have to miss my grandpa's funeral in CA this Saturday.

But we're grateful for small improvements! Job isn't constantly writhing in pain any more and we have some goals to work towards now. We've been able to get more sleep too. It's still hard to find contentment and joy this week, but we're working on it. God has been very gracious to us this week and we want to be grateful. Certainly we can (and have!) acknowledge(d) the hard things, but we don't want to wallow there.