Jax story part 2

Ok, I'm going to try and remember these next four months the best I can. It still seems like a blur, I may have to refer to his medical records. Ha Ha. There are things I will leave out, like multiple ct scans, MRI's, and placements of central lines and art lines, there are just to many of those to remember. I also forgot to say his heart defect. The typical T21 defect, complete AV canal, PDA, and pulmonary hypertension.

One day after we came back from California, Jax went back in the hospital with respitory distress. That was April 17, 2006. He stayed on the floor for a week, gradually getting worse and worse. From 1 liter oxygen to 3 to 4 to one night 10 liters by mask. That night I was getting very irritated. What does it take to send this kid to PICU? The residents picked their noses and just waited around. It wasn't until the cardiology fellow came by and freaked out because he was still on the floor. So then we were running to PICU. They imediatly put him on c-pap, but they waited so long that he only lasted about 10 minutes before they had to intubate him. They said it was pnemonia, and he was going into heart failure ( he was unrepaired)

He stayed on the vent for one week, but when they extubated him, he only lasted 8 hours before being reintubated. To save space, this happened 3 times that during a month and a half. He was finally extubated and went to the floor in May, but that only lasted 2 days and he was back intubated. On May 16 he had a heart cath, were his cardiologist attempted to block his PDA, which they said was huge and could be causing his respitory failure, but he wasn't able to block it off. He continued to get line infections and everything else you get in the hospital. When he was finally infection free we begged them to hurry and repair his heart before he caught something else. It was obvious we wouldn't get him extubated until then.

They scheduled surgery for June 12, and then the night before he spiked a temp and it had to be cancelled. We were devestated, would I ever get to hold my baby again? They then found that he had a chylothorax, or fatty fluid in his right lung. A chest tube was put in. Then they decided to do surgery and close his PDA, it doesn't require bypass, so they did that in hopes of getting him extubated. Of course it didn't work. On June 25, he had a hypoxic brain injury. I got to the hospital about 9 in the morning, and I could tell something was wrong. He had a high fever and his heart rate was in the 200's. Just then the lab called to say his glucose was 17. WHAT. How do you let his glucose drop to 17? Thats when I found out they had stopped all of his IV's because he was bleeding from them. Hello, then a few minutes later his temp went to 42.7, which is 108.0. Then the doc had no idea what that was in farenheit. I had to tell her. Then the cooling methods finally happened, but by then, his brain was fried. It was the combination of the two that caused severe brain damage. His cardiologist asked if we still wanted to fix his heart. It was horrible. His eyes would just wander like a blind persons, and he wouldn't move at all. Slowly after a few days, he started to come back around. We were not giving up on him yet, he had made it this far.

It was then decided that he couldn't have his open heart for two weeks because the brain had to heal. So they did another surgery to try and stop the fluid leaking in his lung, a thoracic duct ligation. A few days after that we finally got him extubated, Yeah. They kept him on bi pap to avoid having to reintubate him before surgery. 10 days he stayed on the bi pap. Here they took him off long enough for me to hold my baby for the first time extubated in 3 months, it was heaven.

On July 18, he had his open heart. He did fabulous. He had to stay on the vent for 9 days because of his already sick lungs. But then we finally got him healthy enough to come home. That was Aug. 7.After 4 months, 8 times being reintubated, 4 surgeries, and like I said, many lines, scans,echos, you get the picture.

Once again, I'm going to stop and I'll finish his story tomorrow, that 4 months alone takes up a lot of space. See you then.