Thursday 5th Update

What a long day it has been... I feel like I have been run over by a truck.

Will made it off of the bypass machine and into the ICU... this surprised everybody, even Dr. Bove. Nobody expected him to make it. Bove said that Will was indeed a fighter!

Dr. Bove said that when he opened Will's chest, his heart muscle was thick and full of fluid. He said that his pressures were higher than what he had anticipated. Bove also found that his pulmonary artery was a bit small, so he made a patch (which did require him to put Will on circulatory arrest... but not for very long; nothing like the Norwood). He said that the artery is still small, but over time it will get bigger. He said that the Rastelli repair itself went very well. The echo afterwards showed that the heart was functioning well.

The pressures inside his heart are at a good level for him. And, amazingly, Will didn't need the pacemaker for very long... he came up without it.

We are still not out of the woods by any means. He is very critical. The next 12, 24, 48 hours will be very telling in how (or if) he recovers. Will is on extremely high levels (even maxed out in some cases) on several medications (epi, vassopressin, milrinone, dopamine, fentnyl). He was also bleeding out a little more than he should, but the blood flow has decreased over the past few minutes.

Dr. Bove had to leave his chest open due to the pressures and mainly because of the position of his conduit. He even placed a tube across his chest to make sure that his chest does not close a little bit on it's own, because even the smallest bit of pressure could cause problems with his conduit. After five or seven days, Dr. Bove (or one of his plastic surgeon colleagues) will take some of Will's tissues to help close his chest up a little. This is sort of a temporary measure to protect his chest opening from getting infected by his trach. It will be a good while we think before Will can tolerate a normal chest closure... even then, Dr. Bove will have to take him down to the OR to do the procedure. (They normally due this at the bedside.)

Josh & I are sleeping in a sleeping room tonight next to the ICU so we will be in close proximity in case he codes. We have asked that they not put him on ECMO (a means of life support) in case this happens. With his history of a brain bleed, ECMO would more than likely cause severe brain damage, and just delay the inevitable.

Will is the strongest baby I have ever known. When I just went back to see him, I held his hand and kissed his forehead. He immediately opened his eyes and looked at me, which is surprising considering all of the sedation meds he is on. Seeing him do that is so reassuring... He is giving it all he has!!

I'll continue to keep you posted.