Thursday, September 11, 2014

Sick

Magnus was back at school all last week, and brought home a beginning-of-the-year cold to share with all of us! We were worried, because that is the last thing his lungs need right now in their fragile state. Magnus was pretty sick for about 3 days with a runny nose and coughing and then seemed well enough to go back to school on Tuesday of this week. I seem to have gotten much sicker than he did and at this point have completely lost my voice, so I'm not sure how I'm going to be able to teach classes today!

His doctor had wanted us to bring Magnus in for a follow-up chest X-ray, especially since he's been sick. We did that last night, and the Dr. e-mailed me to say that she thinks he might have some fluid on his right lung again, but that she wasn't sure because she hadn't seen his last X-ray for comparison. I guess it's at least good that if there is fluid, it must be a pretty small amount, and hopefully it will be unchanged from his last X-ray. If it does look worse, I'm not sure what they will want us to do...maybe more diuretics. Nobody has said the "h" word yet, but I'm assuming it's not off the table. Sigh.

Tuesday, August 26, 2014

Deja Vu

Magnus is out of his cath. We got to go back and see him around 7 p.m. He was awake and asking for cookies (they didn't want to give them to him right away in case his stomach was still funny from the anesthesia).

The news we got from the cath was not great. His Fontan pressure is too high. It is 20. Optimal is 10–15. This is bad for the long-term viability of his Fontan circulation. The pulmonary hypertension doctor wants to be aggressive and put him on a new medication. Ordinarily, this would be no big deal, as he already takes many medications, but this is a medication that must be injected; in his case they are proposing that he get a subcutaneous pump like an insulin pump. Because he's small, it would go on his leg rather than his abdomen. Needless to say, I have some reservations about this.

It all kind of feels like deja vu. After his last open heart surgery, the Glenn, we went through something very similar. His Glenn pressures were too high. So, his doctors wanted to be aggressive and they put him on oxygen 24 hours a day and on Viagra. We were on oxygen for 7 months, it caused huge disruption in our lives, and it ended up not really doing anything. What did help was the Viagra (but it took a long time to start working), and also just growing and giving his body some time.

Anyway, my goal for tomorrow when I go back to the hospital is to talk to the doctors about alternatives and to try to do more research between now and then.

ETA: I forgot to mention that when they tried to drain the fluid from his "effusion" there was none. I mean, there used to be an effusion there, and the diuretics cleared it up and what had appeared to be remaining effusion was actually "pleural thickening," which I guess means thickening of his pleural membrane. I didn't think to ask about the clinical significance of that, if any. But at least he didn't get a chest tube.

Long cath

Magnus went in for his cath at about 3 p.m. They said it would be about 2 hours, but they are still in there. We just got something of an update: they were able to drain the fluid from his effusion without putting in a chest tube (this is good), but the bad news is that his Fontan pressures are high (this is bad) and they are coiling off some collateral vessels (also bad). One of the doctors just called Iggy and said that he was probably going to be going back to the ICU, but didn't explain why and I didn't get a chance to talk to her. The person I spoke to in the cath lab also said she thought they might be done pretty soon, but she didn't know much about what was going on.

Cath day again

I had to go teach my class yesterday morning, so I was gone from the hospital for most of the day while Iggy came down and stayed with Magnus. When I got back, I was surprised to learn that our plan of waiting for the effusion to go away and then going to the cath lab had been discarded and that instead, he would be going in for a cath on Tuesday afternoon.

I was confused, but finally someone came and told me that this new plan was because the diuretics didn't seem to be having the desired effects on the effusion. This is concerning because it may be indicative of problems with his hemodynamics. That's why they are doing the cath today. However, it could also just be a consequence of his paralyzed diaphragm. They also said that although they were going to try to drain the fluid from his effusion with a needle that they might need to put in a chest tube, too.

He's supposed to go back to the cath lab at 2 p.m. Here's hoping for good news and no chest tube.

Sunday, August 24, 2014

Day 4

This morning started out pretty well. Magnus slept through the big earthquake we had last night (I most definitely did not) as well as the 2 vitals checks and a mid-night diaper change. I had managed to talk the doctors out of doing any morning labs today, so we didn't have a blood draw. After breakfast and meds, Magnus had an X-ray and we went down to the outdoor courtyard and played for a while. When we came back, we were right in time for the team to round on him, but we unfortunately learned that his X-ray looked about the same as yesterday, or if anything, a little bit worse. His fluid balance had been even over the last 24 hours (he was taking in the same amount as he was peeing out, so basically no progress). They decided to add a second diuretic to try to accelerate things. The lack of progress was a little disappointing, but then my cousin Chris came to visit us and even brought us some non-hospital food for lunch. We went outside to eat, and showed Chris the train and thoroughly enjoyed our visit. Then it was time to go back to the room for his afternoon IV diuretic dose and ugggh, his IV had gone bad. The vascular access experts are not here on Sundays, so after they took his old IV out, they let us go to the playroom while they tried to find someone good. So, they tried. Twice. It was bad. There was a lot of rooting around. Magnus was very brave. So brave that as soon as it was over, I took him down to the vending machine to get a Rice Krispie Treat. Luckily, we did then get a reprieve and they're going to wait until tomorrow morning when the vascular access team is here to try again. The down side of that is that this may delay the resolution of the effusion, but I feel OK with that tradeoff.

Saturday, August 23, 2014

Here for a while

Well, for a while today it was looking like this would be a nice, short, easy hospital visit. As of this morning, we were told that if his effusion was looking better, he'd be switched to oral diuretics and then if things continued to improve that we would be home on Sunday. But, that was before the hospital doctors talked to the folks on the pulmonary hypertension team, who are not here on the weekends, but who called in to say that they wanted Magnus to stay on IV diuretics until his effusion is completely gone and then they want him to have a cardiac catheterization after it's gone. This is all very frustrating for a multitude of reasons; first, because although we've been in the hospital for more than 2 days now, nobody has come to talk to us about why this effusion developed and what it all means. I can intuit that because the PH team is advocating a cath and that they originally were talking chest tube that they are quite concerned about the impact of the effusion, but I don't totally understand why (they did mention in clinic that having an effusion can affect the hemodynamics of the Fontan circulation, so I guess they want to do the cath to see if his pressures have gotten screwed up and/or he has grown any new collaterals, but since we haven't actually gotten to talk to any of those doctors I have no idea!) And then second, we have to figure out how to integrate this unplanned hospitalization into our lives...Magnus will miss school but Iggy and I really can't afford to miss work, so I honestly don't know how we are going to make it through the week. We're going to have to rent a car, I guess? We will figure it out, we always do, but I just have no idea how right now.

On the bright side, Magnus is in very good spirits, and they are letting us be off the monitors except for checking vitals every 4 hours so we can roam around the hospital at will.

Thursday, August 21, 2014

In the hospital

Sorry for the lack of updates here! To make a long story kind of short, because it is very late and I am exhausted, Magnus has been admitted to the ICU. At first, they were going to put in a chest tube (which is pretty much what it sounds like...they poke a hole in his chest and put a tube in to drain fluid from around the lungs). But then they changed their minds and decided that they were going to try IV diuretics first. I have no idea how long we will be here or what the significance (if any) of this development is. I have been at work all day and drove straight to the hospital when my class got out at 8:30 p.m. (in a town about an hour away from here). Of course he's been asleep the whole time I've been here, but it's such a huge relief to finally be with him!