Hi guys. We had our usual 2 week visit to Dr. Kramer today. It was a mix of good and bad news I guess. First the good....his liver still appears to be down (YEAH!) and his growth is on target. Oh yeah...the levels of amniotic fluid are also looking right on target and we got some cute pictures. The not so great news is that his heart has moved all the way to the right. As a consequence we're losing some of that precious right lung as it's getting crowded out. He did gain more lung on the left though. Overall his lung to head ratio (LHR) was 0.4 which is actually very bad but it's still early according to the doctors and will probably end up in a range of 0.4-0.7 (but who knows?!). Also, because his heart is pushed so far to the right we have to start monitoring to make sure none of the blood vessels get crimped off. Yet another thing we didn't see coming but I guess that's normal for CDH.
The other major thing is that Dr. Kramer wants to send our records to John's Hopkins, Children's Hospital of Philly (CHOP) and Houston. He said Jack will definitely need to go on ECMO (heart lung bypass) when he's born because of the severity of the defect. Right now he's thinking they might want to do a procedure called EXIT to ECMO. They do a scheduled C-section but would only deliver Jack's head first. That way he's still getting heart-lung bypass through me and his cord and then they hook his head up to ECMO. When that's done they finish the delivery and he won't have any downtime where he may be starved of oxygen. In that sense it's good but it's risky for me and Jack. We also won't know where we will deliver now. The possibilities are Washington Hospital Center; Houston, TX; CHOP or Johns Hopkins. Dr. Kramer said that Children's in D.C. is well equipped and can handle the surgery but we may need to move to another site instead if they are better setup to handle the ECMO and getting Jack stabalized which is priority #1. I guess today wasn't the great news we wanted but I'm beginning to see that this is just a huge roller coaster and things constantly change. On the bright side that gives me hope but it's also incredibly stressful because I can't really plan for anything. Ultimately we'll go where ever they say is best (even if that's Texas or Philly) and do what ever procedures they tell us to. Thanks to everyone for your support and prayers.
Love
Vic
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