We’ve had a speed bump on the road to recovery and normalcy. This afternoon, while I was feeding Douglas from the bottle, a couple nurses I didn’t know came in. Apparently, Douglas had gone into Arrhythmia – an irregular heat beat. Instead of about 150 beats/minute, it was about 250 beats/minute, and the shape of the EKG was wrong. The problem was supraventricular tachycardia (SVT), a condition in which the heart’s electrical signals get into the wrong pattern, beating faster and less efficiently than it should be. It’s not lethal or an emergency, but it means that his heart is working harder than it should be.
In order to fix an SVT, you need to get the heart to reset to a normal rhythm. There are medicines that do the job, but there are first some non-medical approaches that sometimes work, and that’s what the nurses did first. They tipped him upside-down to try to put pressure on the vagus nerve to trick the heart into restarting. When that didn’t work, they put ice on his face, hoping that his angry reaction would do the same trick. That didn’t work, either.
At this point, I asked what was happening, and Jenny pretty much answered for the nurses. In Jenny’s previous job with Stereotaxis, she worked for years in permanently repairing adult SVTs. It’s good that she knew what was going on, and it helped me know that this was serious, but not life-threatening, despite the medical staff rushing in.
With the failure of the non-medical approaches, that left putting in Adenosine through an IV. Unfortunately, they had removed his scalp IV this morning because it was oozing, so they had to reinsert an IV. By this point, there were about 5 nurses and 3 doctors in the room, and they brought in an IV expert from the PICU, who amazingly made it on her second try (there really weren’t that many candidate veins left). With the IV in, they were able to get his heart to restore its normal rhythm (“to convert”) with the third dose of Adenosine.
At that point, they told us that they had seen in some of his EKG readings from before the episode that he’d been having SVT for a while, but that he’d been pulling himself out of them. This is actually not uncommon, and it happens a lot with babies outside the hospital without parents knowing. The problem was that he wasn’t coming out of his hyper-rhythm, but they knew it wasn’t too bad because he was responsive throughout and really unhappy when they were poking him and shining bright lights on him.
They started him on a beta-blocker an hour later to try to prevent further episodes, but another major one happened before the medicine kicked in (actually, we watched him go in and out of SVT a few times first). So, the staff all came back in, and they needed two more doses of Adenosine to get his heart back to normal.
Since then, his heartbeat has been normal, so we hope that the beta-blockers will take care of it all. Apparently, there are 11 or 12 different things that can cause SVT, so we don’t really know what the problem is, but they think it’s completely unrelated to the d-TGV and the operations he has had. It’s just something that happens. It’s not horrible that it happens, but it’s not great. It does mean that he will have to stay in the hospital until at least Sunday, but likely longer. At one point today, we thought tomorrow might have been the homecoming, but we’ll have to wait.
Then again, Douglas has been having trouble keeping enough interest in eating to take the amount of milk that he needs to take for his nutrition, so we’ve had to put his feeding tube back in. So, Douglas needs a little more help. We’d love to just pick hum up and run home, but it’s not best for his heart or his eating.
Just so this isn’t all bad news, we did get some good news today. Douglas’s echocardiogram and x-ray this morning were great (Jenny loved watching the echo – she even saw the stitches in the heart from repairing the hole they cut during the cath procedure his first night). He also had his first hearing test, and it was perfect. He’s a really strong boy – he can already hold his head up a bit at nine days. And his eye-to-eye contact is great.
So, it was a harder day than we expected. Every other day was nothing but progress. Today was “One step forward, Two steps back.” I guess we have to learn that some days are like that in parenting.