Mav had a pretty good night and has been pretty stable today. He's still on his epi and milrinone drips. He's very swollen today, but it's just his response to surgery (the whole third-spacing/capillary leak syndrome). Everything looks about how they expected. The next few days will just be supporting him while he gets through this post-surgery phase. More later - jc

He's back in the PICU. He looks so much better. His chest is closed and he has a mediastinal tube. I can already tell he's lost alot of fluid. He's on an epi drip and milrinone, he has pacer wires in and is being paced right now. His capillary refill in his feet is brisk and that's a first for him. They're getting ready to give him some blood. We are so relieved and thankful. Hopefully he'll continue to have a good night. Thanks for all your thoughts and prayers - love you all - jc

New update - patch is complete. Mav is off the heart-lung machine and the right ventricular pressure is 1/3 of systemic (normal is around 1/4) - which is wonderful for him. It was 120% prior to surgery. Looks like they won't have to do the homograft! Dr. M is finishing up and will then close. He should be finished in about an hour or so. He came off the bypass machine without any problems and has tolerated the surgery well. YEA! jc

Kathy just called and gave us an update. Dr. M has sewn in the first half of the patch and is getting ready to sew in the second half. After that they will take him off the pump and check the pressure in his right ventricle. He told Kathy he didn't think he would have to do the graft, but they won't know for sure until he's off the pump. More later - jc

Mav wasn't taken to the OR until 3:00pm. Kathy, Dr. M's nurse practitioner, just called and said they just made the incision. That was about 5:30. They were placing arterial lines and another central line and getting him on the pump (heart-lung machine). We should get an update in one hour letting us know if the procedure expanding the pulmonary artery is going to work. If not, that means there is stenosis (constriction) at the valve area. If that is the case, He will have to place a homograft - it's a cadaver artery that will be placed in a spot on the right ventricle and will bypass the stenosed part of the pulmonary artery. This is a more extensive procedure and will require follow-up surgeries as Mav grows. Please pray that he can just fix the pulmonary artery that is there. Thanks -I'll keep you all updated. jc

Pics and a video

10/24/08
10/24/08

11/1/08 - poor little puffy boy

Here are a few recent pics and a video of Mav. I'll put the dates below them. Greg told me they placed an abdominal drain this afternoon and Mav lost 170mls (almost 6 oz) of fluid from it. He says he's looking alot better now and he's making more urine.

Mav had a bit of a hard time after getting out of the cath lab, but they gave him some blood, sedated and paralyzed him, and changed his vent settings and he was doing better this morning when I left. He was restarted on a little bit of nor-epi. He is still retaining alot of fluid and is so edematous again that he can't open his eyes. His BUN was down to 60, so they restarted the diuretic coctail this morning to try to get some fluid off prior to surgery on Monday. I'm back in Oklahoma with the kids until Monday morning, then Greg and I will both be in TX next week for surgery and the following days. Just say a prayer that he can lose some more fluid and stay stable until surgery. Thanks - jc

P.S. I'll post some pics this evening. We're getting ready to go to the park. The weather is great.