He's now in the PICU and looking much more stable and we have a plan. Looks like tracheitis, at least preliminarily, and he's already responding to antibiotics. He's also given lots of smiles, hand holding and pulled his EEG leads off this morning. So that's where things are in a nutshell.
If you need to stop reading now, please do. I will keep writing for my own benefit. You're welcome to join my therapy session or not. It's all good. (This is also likely to be long.)
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We don't come home from the hospital "all better." We come home when we can do the things at home the hospital is doing. I knew it would be more intense with his new med and increased frequency of treatments, but it was also totally doable.
He started running fevers and I thought it might have been a reaction to his transfusion. They were intermittent and not that high at first, but they also didn't go away like they should have after a few days.
He stopped tolerating his vest and needed to be bagged Saturday morning. Not completely out of his norm but still... He was still having a few "spells" a day, but not nearly as many or as intense, dropping sats but not as low. We even made it to the neighborhood picnic Saturday night, although I left a little early because he was starting to struggle more.
Saturday night and into Sunday went well. Due to an oversight, his critical heart med was missed Sunday morning. This is the one that normally he gets four times a day but we'd increased to six times a day temporarily. By the time I discovered the error, it had been seven hours since his last dose instead of four. He got albuterol during Sacrament meeting and then I had to take him out of Relief Society because even turning up his oxygen he didn't do well. Ended up pulling his brother out of class to bag him while we went home a little early so he could get the med that had been missed, hoping it would fix everything.
It didn't "fix" it, but he did improve. At least he was able to go back on the vent and not be bagged. He was fevering again, so I gave meds for that, albuterol just to try to open him up more, and then even his seizure rescue med because it has sedating properties and I was hoping that if he would relax more, he'd breathe better. We were doing his meds as frequently as possible, but I also began to suspect that maybe this was an infection or illness because he would respond to his Tylenol and Motrin. If his fevers are driven by neurological irritability (or as Deborah put it: "Cranky Brain"), those won't touch them. He needs other rescue meds instead. But I wasn't positive because frankly, I was giving him everything I could, including those rescue meds, trying to keep him stable.
He actually did "okay" through the night Sunday night but I had already decided that he wasn't going to school like we planned on Monday. His nurse showed up on Monday and I planned to run errands and take care of a few things. She was going to take him out on a walk. We both thought that if we could get him up and moving, things might improve. But he struggled more so that got scrapped. He bounced back and forth from 10 to 15 liters of oxygen just to maintain, sometimes needing to be bagged. More Tylenol and Motrin. Put two pulse/ox probes on so we could monitor his pulmonary hypertension, which was actually pretty okay.
His tummy got big and at 11:30 when H pulled back to make sure he didn't have a bunch of air, we got vitamins and senna that had been given at 7 am, so nothing was moving. We stopped feeds and got ready to go. Right up until we left, I wondered if an ambulance would be better. Frankly, as we headed out, his pulse/ox wasn't reading great and I considered turning at the fire station, but ultimately we just came up with H bagging him all the way.
We got here and he was a mess, putting it mildly. I know the nurse at triage was following protocol when she asked us to check in with registration, but there really wasn't time. I asked if we could just do that in the back because he was in trouble. In her defense, I have showed up here with him on a bag and otherwise stable. But not this time.
I pointed out (and used the word "mess") that he was being bagged on six liters of oxygen and struggling to maintain sats when he was usually on 2-4 liters on a vent and we were in trouble. She immediately brought us back to a large room while calling for an "urgent response, code red patient". The room was full and busy. Code status was verified (he's still a full code and there was the real chance that he would code). A hospital vent was brought in and he was put on it while two teams put in two IV's, labs were drawn, x-rays ordered, antibiotics and fluids started (all the sepsis protocols) and he mostly just took it. There were some tears, but no fighting. He required 100% oxygen to just approach his goal of 77%. We had NO wiggle room.
Preliminary results really didn't point to anything in particular, and he was transferred to the PICU. Up here he became almost completely non-responsive. He struggled again with his sats and required more bagging with the ICU bag, but this time he started coughing up some nasty stuff and then was more stable. CT scan of the brain was ordered to make sure he didn't have anything going on in there that would need intervention. It was negative, thank goodness. An 24-48 hour EEG was started to make sure he wasn't having subclinical seizures. He actually was a little interactive as they put the leads on, not a lot but better than before. And we were able to wean his oxygen a bit.
He actually slept okay overnight.
This morning has brought a much different child. He has decided that the EEG is not necessary and started removing it. The doctor thought it was funny, agreed with him, and sent orders to remove it. Physical therapy and occupational therapy have been in for an assessment and he smiled and played with them. He held hands with the respiratory therapist. We've pulled more "junk" from his lungs (even though the x-ray looked pretty much just like it always does).
And his trach aspirate (stuff we suctioned out on admission to check for infection) is growing a large amount of white blood cells. Tracheitis for the win. They're also checking again that nasty right ear, because yes, it is still nasty. You know, MRSA took up residence in there quite a while ago and doesn't seem to be paying attention to any of the eviction notices.
Twelve hours into antibiotics and he's doing much better. He's also getting blood. Again. Because of course...
So there we are, or here we are. But yeah, much more stable, interactive and happy than he was yesterday. Much more hopeful.
While there is life, there's hope...
~John Gay
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