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.
2 months ago