Our son Magnus was born November 19, 2009 with a serious congenital heart defect, HLHS. I set up this blog to keep our family and friends updated on his condition, and to connect with other families dealing with HLHS.
Sunday, March 2, 2014
And we're back
Wow, last post October 2012! That is a good thing. Since then, life has been pretty normal. Magnus goes in for a cardiology checkup every few months and it always looks good. He's only been hospitalized once in the last two years, and that was back in October 2013 when he came down with a stomach virus that required an IV for hydration. And even then, we were never really worried.
But now, things are likely to get complicated again. On Friday, Magnus will go to UCSF for a cardiac catheterization, his eighth overall, but his first since January 2012. They're calling this his pre-Fontan cath...the main goal is going to be to measure the pressures in his pulmonary circuit to see if he is a good candidate for his third planned surgery, the Fontan procedure. As you may recall, his candidacy has been in question for some time now because he has had pulmonary hypertension, which makes the Fontan risky. His pulmonary hypertension is the reason why he was on supplemental oxygen 24 hours a day from October 2010 until July 2011, and why he still takes Viagra. At the last cath his pulmonary pressures were better, but they made no promises about his Fontan chances.
If he's not a candidate, his prognosis will be significantly worse, and he will likely go into heart failure and need a heart transplant by the time he's 10 years old or so.
If he does have the surgery, he has a good chance of continued good health for quite a long time--maybe 20, 30, 40 years, or beyond. But some kids don't do well with this surgery. Even if he is determined to be a candidate, he will be "high risk" due to his pulmonary hypertension. There's a possibility he could come out of this surgery considerably weaker than he went into it.
There's a lot of stuff here that is out of our control. We're trying to do whatever we can for the things that are (somewhat) in our control. We are going to try to get our insurance to cover us to travel to either Boston Children's Hospital or Children's Hospital of Philadelphia to have the Fontan there (assuming that Magnus is a candidate). These are the two hospitals that do the largest number of these surgeries in the U.S. and have the most institutional experience. If we can't get approval to go to Boston or Philadelphia, our next choice would be Stanford, which also has a larger program than UCSF. We are lucky that Iggy and I both have some flexibility in our jobs, although the flip side of that is that neither of us gets any paid time off. We're hoping that after this summer, we'll have another long period in which we won't have to be quite so flexible anymore.