Second Surgery - 10-26-10

We came up Sunday night so Jordan wouldn't be worn out for his first follow up appointment with the cardiologist. We rushed around to get there on time without even eating breakfast. It is amazing how long it takes to do everything with a newborn added to the mix. When the nurse at Dr V's checked his oxygen sat's they were really low. We thought it was just his wiggling since we have had lots of trouble monitoring it ourselves.

Backtrack........At home last week we had a home healthcare nurse come and she didn't have anything to measure his sats and then friday at the pediatrician they didn't have anything either. They did write us a prescription to get a pulse oximeter for home so we could monitor him ourselves. The handheld one they gave us worked friday but would not work saturday. We went to the hospital to check him and then ended up going back and getting a hospital grade machine from the home healthcare company. We felt at ease because his sats were looking good.

Dr V's crew hooked up 4 machines to Jordan, including ours and all of them showed low sats but ours. Somehow it was not measuring properly. We had tried so hard to do everything we could to take care of him. They sent us to the ER and we could not get the nurses to see the urgency of the situation, at first. When we got back to a room they checked his sats and she said "follow me and we ran to another room in the back". They hooked him up to another machine and immediately doctors were everywhere. Someone grabbed Jordan and ran into a trauma room. They started hooking him up to machines and trying to get an IV started. Jordan was screaming and all we could do was stand there and cry. It looked like a bomb had gone off in the room - there were syringes, needles and machines everywhere. Several of Jordan's doctors from his previous stay were in the room asking what is going on. Everyone kept saying did ya'll think he was blue, has he been throwing up, when was the last time he ate. All we could say was his color was great, he had been eating like a pig. He pulled his NG tube out last Wednesday and started sucking the bottle like a professional. They couldn't get an IV so they immediately took us to CICU. Once we got there a nurse took us to another room. Once they got him stable, she came in and said "I am sorry for rushing ya'll out but I knew we had to get busy." She told us they had to shave two parts of his head to try for a successful IV. They didn't have any luck with any of his arms, legs or head. They ended up getting one in his neck. We finally got to see him and it was terrible to see him laying there so lifeless. We hadn't been with him 20 minutes when the nurse said "Dr. Cantro his sats are dropping...we watched them go from 70, 60, 50, 40 and 30's...they were pumping him with volume and once again we were rushed to another room. The nurse came in and said they were intubating him. It was the best way for them to get him stablized for his heart cath. Once they took him to the cath lab the stent placement was unsuccessful. They got the stent in and it shifted backwards. They left it in with the wire attached so it wouldn't float off into the heart. They had talked about taking him to surgery right then but he was stable so it would be best to wait until the morning. After talking with Dr. V and Dr. Kirshbom they kept telling us we weren't to blame for what happened. When they did the first open heart surgery they put in a shunt to help the lungs get blood flow from right side of the heart. The muscle around the shunt had started constricting the shunt and he wasn't getting enough oxygenated blood to his lungs. They said its very rare for this to happen with the sano shunt but they were going to do everything possible to fix the problem. They kept him paralyzed all night, knocked out and pain free.

We got here at 6am to see him before they took him off to surgery a little after 7. Please keep all of the prayers coming. A second open heart surgery is a lot of stress on a 26 day old baby. He has been taking his bottle like we are starving him and has gained over a pound at home last week. We can't wait to get through this huge bump in the road and get our beautiful little man back home again. PRAY PRAY PRAY and PRAY some more!!