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.
To update you since I last posted right after Magnus's cath:
-We sought opinions on Magnus's case from Stanford, Children's Hospital of Philadelphia, and Boston Children's Hospital
-We scheduled Magnus for surgery at Stanford
-I drove down to Stanford last Friday to meet with the surgeon, but the meeting was not very productive since he had not seriously reviewed Magnus's case, but he did change our surgery date from June 2 to June 9
-We planned for me to take the whole summer off of work and Magnus to take the summer off from school
And then today we got a call from our cardiologist saying that Stanford had discussed Magnus's case in conference and that some new concerns had been raised, sigh.
Basically, although Magnus's last cath at UCSF showed that his Glenn pressures were in the Fontan-eligible range (though right on the borderline), there was some concern that his pressures during the cath were artificially low because 1. he is on medication for pulmonary hypertension, and 2. he has a big collateral vein that releases pressure from the pulmonary circuit. So, they want him to go off the PH medication immediately, and he will have to undergo another cath in 4–6 weeks. If his pressures go up without the medication, or the cath reveals that he is dependent on that vein for his low pressures, they may decide that he is not a Fontan candidate after all.
Another reason for doing the cath is that the stent he had placed in his left pulmonary artery when he was a baby is now too small, and they would like to try to remove it if he does have the Fontan, although they are not sure if this would be possible. Thus, they want to try to get some better images of it during the cath.
So, that's where we stand. Another cath and then probably his Fontan right afterward, although maybe not. It's disappointing to still be up in the air about whether we are going ahead with surgery on June 9th after we cancelled all our activities for the summer, but obviously it's more important to make the right decision for Magnus's health.
The cath lab just called with an update. Apparently everything looks good and he doesn't have any collaterals they need to coil, so no nasty surprises there. The nurse I spoke to didn't say anything about his pressures or Fontan eligibility. But they're just going to open up the stent he has in his pulmonary artery, and then they'll be done.
Dropoff in the cath lab went pretty well. They actually used oral versed and then IV meds rather than gas to sedate him. People often report that their kids get "goofy" with the versed, but with Magnus's normal goofy baseline, he didn't really seem any different! He just started talking more and more slowly and then went to sleep.
Iggy and I had a nice lunch/dinner. Now we're in the UCSF library waiting for the call to go back and pick Magnus up.