I will start by saying that things seem to be going really well right now, but after I last posted, they got worse before they got better.
I went back to the sleep room at around 3:30 a.m. because Magnus seemed stable and sleepy, and I was awoken by a knock on the door. "Are you Magnus's mom? There's an emergency at the bedside." I quickly gathered my stuff and walked around the corner. There were about 10 people in the room, another 10 outside it, and the crash cart was parked just outside. "What happened?" I asked the nurse. "Um, he had an irregular heart rate," she told me. They basically had everything under control at that point, but he had woken up, started thrashing around, and then his heart rate started going really fast, something that is called ventricular tachycardia. At first, his blood pressure stayed stable, but then it started dropping, meaning that his heart was no longer pumping effectively. Luckily, they were able to get his heart under control using his pacer wires and they didn't have to do chest compressions or shock him, though they had the pads ready in place to do that.
The doctor explained to me that there were a few possible reasons why this might have happened, some scary, and some less so. They did an echocardiogram shortly afterward that ruled out the scariest possibility of diminished heart function, his function looked great, and the prevailing opinion now is that it probably happened because when he was thrashing around one of his chest tubes might have brushed up against his heart, irritating it.
On top of all that, the x rays showed that his lungs were not making much progress despite the CPAP, so they were considering 2 possibilities: 1. putting him back on the ventilator and 2. putting in another chest tube to drain fluid from his chest cavity. He already has 2 chest tubes that they put in during the surgery, but due to his previous surgeries he had some "adhesions," basically, scar tissue had caused what is normally one big open chest cavity in a healthy person to form a series of smaller "rooms." So, some of the fluid in his chest did not have access to the tubes in place. After phone consultation with the surgeon (at 5:30 a.m.), they decided to place a third chest tube. Due to his "feistiness," which has been remarked upon by numerous hospital staff members as well as the mom in the room adjacent to ours :) , they heavily sedated him AND restrained his arms during the procedure. I went to breakfast while they placed the tube, and by the time they let me back in, 45 minutes later, the new tube had drained more than 100 ml of fluid and his oxygen saturations had jumped 10 points and have been sitting in the 90s since then (they were in the 80s pretty much all day yesterday). They just did another chest X-Ray and I haven't heard the results yet, but I'm optimistic that things will look a lot better and maybe we can ditch the CPAP mask today. Magnus will be MUCH happier after that.
So, HOPEFULLY, this is the beginning of the turnaround. The attending told me that when he spoke to the surgeon, he had complete faith in the surgery and didn't think there was any possibility that they would need to undo it. We're hoping for a quiet day with no more surprises.
A few people have inquired about visiting. Right now, Magnus is fairly heavily sedated, and when he wakes up he is grumpy. Very grumpy. I'm not sure how much benefit he would get from visitors right now, though his parents would be happy to see you. I'm very hopeful that in the next couple of days he'll be a lot less miserable, and thus less sedated, and more able to properly receive visitors.
Addendum: the heart rhythm specialists were just here and they don't buy the chest tube explanation for his episode. They think it is more likely one of the medications he is on or possibly a reaction of his heart to being on the pacemaker. We'll see if the docs make any changes based on this opinion. Also, they said they thought he was actually in supraventricular tachycardia rather than ventricular tachycardia, which is not QUITE as bad, although still bad.
Addendum 2: at rounds this morning they decided to try taking off the CPAP machine and replacing it with a high-flow cannula. They still don't want him to drink due to the aspiration risk, but now he can suck water from a little sponge. They stressed to us, though, that they still don't totally know what is going on with his lungs and expect that he will have to go back on the CPAP machine. So far, though, his oxygen levels are still looking good!
4 months ago