Finally asleep

Not me, obviously, but after getting those 5 hours last night, and then barely napping all day (it wasn't too hard to understand; we were in a bay with two other families who had a lot of visitors all day long, many of whom were small children, plus it was right where the nurses usually hang out and talk, so between all that plus the normal hospital noises of IV pumps and monitors beeping, it was incredibly loud.

Finally, a little after 4, our nurse suggested that we try giving him Benadryl. I told him that we'd given him Benadryl twice last night with little effect, but at that point I was willing to try anything. He immediately passed out and stayed asleep for several hours. When he woke up, though, he was totally freaked out and wouldn't stop screaming. I eventually calmed him down, though, and then he went right back to sleep. In fact, I think he never really woke up, even though he was screaming; he had this glazed look in his eyes the whole time.

We started him on oxygen here in the hospital, and while I hate the idea of having another medical thing to deal with, I can see already how much easier it makes things on his body, especially while he's sleeping. Not only are his oxygen saturations much higher, his heart rate and breathing rate are lower. So maybe being on oxygen at night will also help with the weight gain thing, which continues to be a bit of a struggle.

I'm also happy because I like the nurse we have tonight, and we had a fantastic nurse during the day. Last night we had a nurse that I'm not so fond of. We also got moved to a much quieter bay, which is fantastic. There's only one other kid in here, and he's asleep, so hopefully we're in for a much quieter and more restful night.

Not today

We're not going home today.

Everyone had been saying we would, but then this morning, the new attending physician who came on duty today came by to talk to me. He said they wanted Magnus to be on oxygen at home.

His oxygen sats have been about the same since his cath, but they're on the low side for where he should be, especially at night. However, having him be on oxygen is pretty life-changing. Luckily, it sounds like now they only want him to be on oxygen at night, which is significantly less life-changing, but still a huge pain for us.

Anyway, I guess that in order to get insurance approval for him to be on oxygen and also for his new medications, we need to go home tomorrow.

Magnus slept for 5 hours last night. Between him not feeling well, and all the light and noise going on in the ward all night, it was pretty much a total nightmare. There's a newborn baby in the bay next to his, and between 3 and 5 a.m. they were trying to do a blood draw on him. As you can imagine, that is not something that anyone can sleep through.

Anyway, I'm at home now, having been relieved by Iggy, and am going to take a nap. Hopefully I'll feel better after I get some sleep.

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.