Take two . . . as I mentioned, I'm writing this on my iPad so if there are any wonky formatting issues, that's why.
Since the last post, Max has been a busy little bee. Right after we celebrated being one year post-transplant, Max got sick (of course). He seemed to have caught a bug of some kind plus the extra iron he was on was irritating his stomach. He needed to be on such a high dose of iron to help combat his severe anemia but it was only supposed to be temporary. We pulled him off the extra iron and after a few days of adjusting, he seemed to feel better. He also started to gain more weight and we're now up over 7kg! That's still pretty skinny for his age/height, but he's definitely heading in the right direction.
Now that he's finally doing well, let's ruin it by going to the hospital!
Yesterday was Max's one year post-transplant heart catheter and biopsy. His procedure was scheduled for 7:30am which meant we had to check in at 5:30am which meant we had to leave Flagstaff around 3am. Could we have stayed down here the night before? Sure, but we were worried about exposing him to any kind of sickness right before his biopsy (this will be funny later--not funny ha-ha, more like funny FML).
The procedure went well except our cardiologist told us that Max's blood oxygen levels had been a little low during the procedure, around the mid-80s, whereas he's usually 98-100% in Phoenix (92-96% in Flagstaff at altitude). But after the procedure, his blood oxygen level was at 98% and after the requisite six hours of waiting, a chest x-ray, and the one bang MRI neurology had requested, we were given the green light to go back to Flagstaff.
Once we got home, we used our home machine to check his blood oxygen levels and were surprised to find them ata 85%. We called the transplant team and they said we were fine to stay in Flag as long as Max's numbers didn't go any lower. Within 30 minutes, his numbers had dropped to the mid-70s and the team told us to drive down to PCH. We didn't feel good about driving down to PCH instead of going to Flagstaff Medical Center to get him oxygen but they insisted so we did as we were told. When we started driving, Max's numbers were in the low 60s. They quickly dropped to 55% and I had Jon pull over so I could get Max out of his car seat. The anesthesia from his procedure made him throw up and although we didn't think he had, it's possible Max could have aspirated some of the vomit. I thumped him on the back a few times and he coughed wetly and heavily. Immediately after that, his numbers jumped up to the mid-80s for the rest of the drive.
Since it was 3am when we got to PCH (that's 24 hours without sleep for those of you keeping track), we had to go through the Emergency Department (ED). They were full so we ended up having to share a room with a child whom I believe to be patient zero for a new super strain of tuberculosis or the plague. Luckily, Max was on board with wearing a mask the whole time we had to be in the ED which helped. He's never done that before but this was an excellent time to start.
What he wasn't on board with, however, was everything else. He kept shouting, "This is bad! This is bad! I'm sad!" which was compeltely devastating. The only thing sadder was the way he kept asking, "Bye-bye? Bye-bye?" because he wanted to go home.
When we were finally transferred up to the CVICU around 5am (26 hours awake), we were assigned the same nurse we had the night of Max's transplant. I can't tell you what a huge relief it was to see a familiar, friendly face. Max was also quite popular amongst some of the other nurses who all wanted to stop by and say hi. None of them saw him when Max was inpatient in November so this was the first time they'd seen him in a year. Needless to say, he looks a little different now. Around 6am, we were finally able to lie down and try to get some rest. Max, however, decided that sleep is for the weak after about 30 minutes so we had to turn to coffee for comfort.
During our brief nap, Max's blood oxygen levels dropped to the 80s so he was put on 0.5L of oxygen. He's already been weaned down to 0.1L by tonight with a blood oxygen level of 96% so hopefully we'll get him back on room air tomorrow.
Thankfully, Max decided to take a huge nap this afternoon which meant Jon and I got to finally take naps, too. We're nowhere near caught up to the amount of sleep we need, but at least we slept enough to stop hallucinating from exhaustion.
As for what's wrong with Max . . . we don't know yet. On the more benign end, this could be a combination of anesthesia aftereffects mixed with a cold. On the bad end, it's the beginning of pneumonia coupled with organ rejection which is problematic because we can manage the rejection by upping his immune suppressor medication but that would make it more difficult for him to fight off an infection. Hopeefully it's the former and it's something that's easy to work out.
Right now, Max is on a 48 hour run of antibiotics so we'll be here until at least Friday, barring any bad test results. We're still waiting for the results of his biopsy; we were supposed to hear back by noon today but in hospital time, "noon" is anytime between actual noon and Christmas of next year.