What a roller coaster the last 2 days have been! We came in yesterday to hear that Bodie would be moving up to the 6th floor (the step-down unit)! While we were excited since it's one step closer to going home, we were really apprehensive since we just didn't feel like he was ready yet (he'd been de-satting a bit), but we figured the doctors knew best. Well, all day long, he continued to desat worse and worse. He'd go all the way down to the 50's when he was mad - and it would take him FOREVER to come back up. We were totally confused since, although he had been a low-satting kid initially, he had just had 2 days of really good sats (high 70's to low 80's). By the end of the day, they decided that he just wasn't ready and they were keeping him in the CTICU until they could figure out his low sat issue. They decided to stop his feeds and put him back on vapotherm, telling us they thought he had fluid again in his lungs and they wanted to get him to pee it out and just give his little body a rest. Even though it technically was a step back, we kind of looked at it as a step toward figuring out what was going wrong. But nonetheless, it was a bit disappointing.
When they did rounds this morning, I mentioned that he had been pretty agitated the last 2 days (corresponding to his dip in sats) and hadn't been able to sleep for more than 10 minutes at a time - the team put that together with the other things the nurse had witnessed (hyper-alertness, sweating, runny eyes, sneezing, etc.) and deduced that he was going through morphine withdrawal! He had been on morphine as needed (where he was getting it pretty frequently) and somewhere in the last 2 days had been taken completely off of it without being weaned! So it turns out the biggest culprit in his lower sats the last 2 days had likely been the fact that the poor guy was jonesing so bad for morphine!
So, they put him back on morphine today and the plan is to give it to him as needed for 24 hours, calculate what his "needs" are and dose it round the clock, weaning by about 10% or so a day until he is off of it. They don't think he needs it for the pain anymore, he's just addicted. I have to say I agree - earlier today, he was really mad and crying, satting in the 60's - literally within seconds of the nurse administering the morphine, his whole body relaxed and his sats shot up to 80! I would say that's the definition of an addict. Poor kid. But apparently it's not uncommon for hypoplasts who've been on painkillers for extended periods like Bodie to have this problem. So glad they have a plan for it. And, I have to say, he was like a whole different kid today - totally relaxed and satting much higher today!
So what does he need prayer for today? A number of things actually:
1. Pray that the morphine withdrawal is truly the case for his low-sats and that, as he gets weaned off the morphine, his sats will continue to stay high.
2. Pray for his feeding. They let us try him on a bottle yesterday and the good news is that he very quickly took 6 of the 10 cc's, which means he knows what to do with a bottle! Praise God for that! The not so good news is that he quickly spit up a couple of times, which can be a sign of intolerance. So they stopped the bottle feeds for the time being. Please pray that they let us try the bottle again soon and that he does better this time around.
3. Bodie still doesn't have much of a cry. We're hoping he's just hoarse from the intubation, but the doctors have expressed some concern that it may be vochal chord paralysis as a result of the intubation. To be honest, I'm not even sure what the long-term implications of that are (it seems that even the kids with vochal chord paralysis typically eventually get their voices back) - they're planning to have an Occupational Therapist take a look at Bodie once he's on the step-down unit to see if there's anything going on there. Please pray that his voice comes back soon so that we don't have to worry about this!
4. Please keep Bodie's roommates in your prayers as well - Pressly (who is 7 weeks old and has been at CHLA for a month already) and Isaac (this little guy has been roomies with Bodie for a while and they seem to be competing over who can get more attention from the nurses - pray that his feeding issues get resolved so he can get over that hurdle!)
Ok, that's it - so sorry for the long update, but just so much to report! Thank you as always for your prayers!