Lets get on track.

The morning of Davids first OHS

I want to apologize for being so "jump aroundish" with my blog. So, I'm going to attempt to get things back on track.

David has not been in the hospital 2 years because he was "kinda sick". David, up until about 3 months ago was always critically ill. David has spent about 85% of his life sedated, and about 45% of his life paralyzed.

After Davids trache operation, we had a few good days, but that didn't last. David was on a drug called Prostiglandin (PGE1) from the moment he was born. The purpose of this drug was to keep his PDA (Patent Ductus Artery) open. Now in a healthy infant, or in another CHDer with non compatible defects, keeping the PDA open is life threatening. Its funny that this little duct is what Davids life depended on. David Interruption in his aortic arch did not allow blood flow to travel to his lower body. The PDA kinda "bypassed" that interruption. When David was about 3 weeks old, the PGE started to no longer be effective, and the ductus started to close. This was a BIG problem.

David went in for a heart catheterization when he was 42 days old and was scheduled for OHS at 48 days old on January 29th 2009. His lungs were getting flooded by blood because of the PDA being opened and it was really effecting his respiratory status. With the PDA narrowing it was restricting blood flow to his intestine and kidneys. David had absolutely no bowl sounds or movement for 8 days. He also was retaining fluid like crazy because of decreased kidney function.

At 7 am on the day of surgery, we handed our baby off to the surgeon, Dr. Kamal Pourmagadaum. The procedure he was having done was called a Hybrid. This consisted of placing bands around his pulmonary arteries to restrict blood flow to his lungs and placing a stint in the PDA to keep it open. Yes, David was born with Pulmonary artery stenosis, but they were not narrow enough to restrict flow sufficiently.

David also was born with a VSD and ASD, so his blood was mixing oxygenated and un-oxygenated. This was actually working to Davids advantage. They did not want him saturating above 75-80% because he would be over oxygenating his lungs seeing as though oxygenated blood should never enter the lungs. So in addition to the hybrid, during surgery they went in and actually made the VSD a bit bigger. This helped to bring his saturation's down with out the use of Nitric, which David had been on for 2 weeks.

The surgery sounded simple enough but when they started the banding part of  the procedure David went into cardiac arrest........for 48 minutes. The surgeon performed chest compressions for 22 minutes. His dedication to not letting David go, amazes me to this day. Most surgeons would have called time of death after a few minutes, but not our surgeon, 22 minutes with his hand in Davids chest pumping his heart until he could get it to start on its own. After the first 22 minutes Davids heart would sporadically stop and require compressions again.

During the surgery my husband and I were pulled from the waiting room into a smaller consultation room. When we walked in we saw the social worker and the chaplain sitting on the sofa. I started crying instantly. I thought they were going to tell me my baby was gone. Instead they told us about what had happened and told us that Dr. Pourmagadaum was pouring his own heart into keeping Davids heart pumping. They prepared us for the fact that David may not come back from the OR and then we sat and waited.

After about another 6 hours The OR nurse came and told us that David was stable yet critical and that he was on his way back from the OR. They had accomplished all they planned to do, now it was all on David.

Fresh out of the OR

It was after midnight before we were able to see David.

The doctors and nurses told us to be prepared. That David may not make it through the night.

That night was hard. His pressures dropped all through the night, he spiked temperatures several times and his heart rate shot up over 200 a few times that night.

Over the next few days David made slow progress, and actually recovered amazingly well :) Davids recovery lasted about 2 weeks, then he was moved back to the NICU. For about 2 weeks, things were going well. That again, didn't last.....................