Pat just can't catch a break. 1 week 3 days old

Pat is in C/T right now, and will go to the catheter lab after that. This morning his lactate levels started to rise, and around 11 AM his nurse (Nurse Ann - we just love her) called some doctors over after running the test several times. A doctor explained to us that the lactate levels is a measure that indicates when something isn't getting enough oxygen.

There followed an ultrasound scan, an X-ray, and another ultrasound. At the second ultrasound Dr. Cohen and Dr. Permut joined the discussion, which went on for some time while Pui and I watched - very alarmed and not following what they were saying at all.

Dr. Cohen came to us as soon as the discussion started to wind down, and explained several things to us. First, they don't know why his lactate levels are high - they scanned his brain and intestines (prime suspects, apparently) and didn't find anything. Also, they still don't know what started the collapse on Saturday. So they planned to do a C/T scan to see if they could find what tissues aren't getting enough oxygen, and a heart catheter to see if the repair is as solid as it appears in the ultrasound, and if the problem might be that the tricuspid regurgitation is greater than they thought. (The tricuspid valve is the only working valve inside Pat's heart, between the right atria and the the right ventricle.) Dr. Cohen told us that the catheter is basically a fishing expedition: they don't really know what they are looking for, and hope to recognize it when they see it. It seems clear the C/T is the same - they are just looking for anomalies.

He also raised the possibility of Pat needing a heart transplant. It's basically a last option, and one they won't seriously consider until all other options are ruled out. If the problem is his tricuspid, he has few options. He said that in babies this young, the flaps of the valve are like tissue paper - too fine and fragile to operate on. Even if we seriously consider a transplant, Pat will have to get much better than he currently is. We pray that it never gets to that point.

Getting Pat moved is a major undertaking: his ECMO machine and all of his IVs all had to be carefully unplugged from the wall, and all the leads to the stationary monitors had to be moved to temporary ones. When they finally wheeled him out to go to C/T, one of the nurses said "I don't think we've ever moved a baby with this much attached. We should get a picture." I didn't take one - I was too numb.

So now we are waiting. It's nearly 6 PM Monday, and the tests should take at least 90 minutes to run and who knows how long to review. Poor Pat - he just can't catch a break. It feels like it's one damn thing after another. We just want him to get better, and all we can do his OK what the doctors want and talk to him and touch him whenever we can. We have a video of him looking up at us and then falling asleep in him mommy's arms, from the night before his surgery. I think of it all the time.