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.
We're hanging out with Magnus in the recovery room. He's still fairly groggy from the anesthesia, but generally seems OK. He has to lie completely flat for 4 hours after the procedure to prevent bleeding where they put the catheter in. The goal is to get up and walk at 7:30 p.m.
The cath Dr. just came back to talk to us, and the results were mixed. The good news is that blood flow to his right lung, which was nonexistent in August, has normalized, and also that they didn't need to do any interventions, which means that we should be able to go home from the hospital tonight. The bad news is that his pressures are actually a little bit higher than they were in August, and the culprit seems to be that his heart ventricle is not relaxing as much as it should, which is making the pressure higher in his Fontan circuit. There are some options for managing this with medication. The cath doc said that they would most likely consider a higher diuretic dose, an ACE inhibitor (which he's been on before), and the dreaded Remodulin (this is the medication that must be administered via a subcutaneous pump). We haven't actually talked to our cardiology team yet, though, so it remains to be seen what will actually be recommended to us.
So, not as good as we'd hoped, but not as bad as it could have been.
Still waiting. After being told that they were ahead of schedule, we were then told that they were now behind schedule because although they were done with the first case, they didn't have a bed for that patient in the part of the hospital he/she needs to go to next. Which is just how things go in the hospital. We're hoping the anesthesia team shows up soon. Magnus just told me that he's hungry, but other than that has been in pretty good spirits.
The cath NP told us she thinks there's an 80% chance we'll be staying overnight. We did pack with that expectation, but I'm still hoping we can get out of here today.
After twice rescheduling due to illness, we are now in pre-op waiting to go back to the cath lab. You never know when you'll actually get to go back when you're second case, but so far things seem to be on schedule (KNOCK ON WOOD). Will update throughout the day!