31

That is the number of collateral veins Magnus had coiled off yesterday. Apparently, that is an extraordinarily high number for a baby his size, because people keep coming up to me and saying that they heard about it, even nurses from the intensive care unit next door!

Magnus is doing basically OK today, but is not feeling so great. I guess it's normal to spike a fever in response to having a bunch of metal placed in your body, and he has done just that. We've been trying to keep him comfortable with tylenol, but he's been pretty cranky all day. He had his first dose of viagra this morning, and he responded fine (they wanted to monitor him to make sure his blood pressure didn't drop too low after getting it).

As things stand now, I think we're still on track to go home tomorrow, although I hope he feels better by then. He seems to feel better now than he did this morning, but is still not completely himself.

By the way, thank you so much to everyone who has posted comments and e-mailed me to offer help. It really means a lot to us, as always!

Back on the ward

Magnus came out of the cath lab around 3:30, and I got here just after he did. He was asleep, but woke up shortly afterward. He was cranky (understandably), hoarse, and very thirsty.

I ran into the main nurse from the cath lab as I was arriving and she (along with everyone else I've spoken to from the cath lab) raved about how well he did during the procedure, meaning that he tolerated the anesthesia well and all the procedures went smoothly.

The cath doctor just came by to talk to me, too. He reiterated Magnus's issues, but said that he thought he could probably take care of all the rest of his collaterals during his next cath, and that he wants to schedule that for after the holidays. He also said that we would know "within a fairly short time frame, maybe 12 months" whether this would fix his problem. That seemed funny to me, because Magnus is not yet 12 months old, so that is literally a lifetime in his case, but I guess it's not really so long in the scheme of things.

He said the worst case scenario, if Magnus's pressures didn't come in line, was that his Glenn shunt would be taken down, and he would go back to post-Norwood. He said that people can live a pretty long time like that, maybe 20 years, before heart failure and transplant. He then pointed out that even in the best case scenario, all these surgeries are considered a bridge to heart transplantation, although that may be "60 or 70 years out" (that is the most optimistic scenario I've ever heard from a cardiologist, but hey, who knows?)

Anyway, in the meantime, it looks like we are here until Sunday (at least) just because with everything they did to him they expect him to feel crappy and be feverish for at least a couple of days. The cath doc also said that they weren't sure what would happen with his sats right now, because they coiled 2 populations of veins, one that was increasing his blood oxygenation, and another that was decreasing it, so it'll be unclear which one wins. Right now they have him on an oxygen cannula, but we'll see how long that lasts once he really wakes up.

Definitely stent

Just called the cath lab to check in; they are almost done coiling off his collaterals and were just going to do one more, and then they're definitely putting a stent in.

More information

I got off the phone with Magnus's cardiologist a little while ago.

He's basically got three problems:
-Collateral veins between his aorta and pulmonary artery
-A slight narrowing of his left pulmonary artery
-Also, collateral veins somewhere else that I did not write down the location of

Today they're going to coil off some, but not all, of his collateral veins. They can't coil them all, because right now he's depending on them for his circulation and if they got them all he'd have very low sats. But they want to get them all eventually, so we're going to be back in the cath lab again in 6 weeks or so.

In addition to this, he's going to need to be on viagra 3 times a day to lower his blood pressure.

They may or may not put a stent in his pulmonary artery to address the narrowing. If they don't do it today, his cardiologist says he will "probably" require it eventually. The downsides of putting the stent in are one, that it won't grow with him, and will eventually need to be removed, which is difficult; and two, that if he has a stent in he'll need to be on an additional anticoagulant drug, Plavix, as well as another drug to counteract the effects of Plavix on the stomach (just when he finally seemed to be growing out of his reflux issues, sigh).

Anyway, the additional medications are an inconvenience and all, but the news of today has potentially grave implications. As his cardiologist put it, "this is big." She said she's had patients who have had these complications before and who have done fine, but it is far from assured that these fixes will work. I didn't think to ask her what the time frame is for knowing if he's getting better, or if there even is one. Well, we've lived with plenty of uncertainty before, and now we just have a little more.

I asked her if this would affect his eligibility for the Fontan (his third staged surgery). She said that if the drugs and coils work, no, but if they don't, yes.

For now, they're going to do what they can do today, and we'll be in the hospital at least overnight because he'll be getting viagra and they need to see if he'll tolerate it.

Check-in

I just called the cath lab to check in and got an update. The cath itself is going fine, but they did find that the pressures in his superior vena cava were quite high, which is what has caused his abnormal head growth. He said that they also found a number of collateral veins. They aren't sure yet what they're going to do about it. They can coil off the veins, but he said that that wouldn't totally fix the problem, and that it may be better to treat him with medications. So, the cath doctor is going to consult with our cardiologist and maybe the cardiac surgeon to figure out what to do. He said they'll probably be there for another couple of hours, though.

I guess it's good that they figured out what's going on. It's not so great that it seems to be something not easily fixed. But I guess at least they do have some options.

No news

We dropped Magnus off in the cath lab a little before 9, and still haven't heard anything back. They said they'd call if they were going to do any interventions, so I guess we're hoping to hear from them soon.

Cath tomorrow

Well, I've been so busy I never even had the time to post to say that we got to go home from the hospital on Monday! I think Magnus probably should have been discharged on Sunday, but anyway, we got out, and then I was so behind on work that I had to grade papers and write lectures instead of watching the Giants win the World Series.

I've continued to play catch-up all week, and maybe it's been good that I've been so busy, because I haven't really had time to worry about this cath tomorrow. The best case scenario would be that they find something minor wrong and are able to fix it. I suppose maybe the second best scenario would be that they don't find anything wrong, although something is clearly causing his lowered sats and increased head growth. The thing I'm really worried about, though, is that they'll find something wrong that can't be fixed. Something really wrong. But I'm trying not to dwell on that possibility.

Anyway, we don't have too long to wait now. He's due at the hospital at 6:45 a.m., and I think he'll probably go into the cath lab around 8. From there, I estimate it'll take a few hours. I'll post any news as I have it.