July 2006

Continuing our journey through the summer of '06. If you missed June or May/April, just click on those and you can read it.
I wished I had a better camera back then. All of my pictures are so dark. Most were taken with disposable cameras that we got from the hospital as "bingo" prizes. I can't remember if I had my first digital camera yet or not.
But if you remember we left June in a horrible situation. He had just had heart surgery to close his PDA, he had a chylothorax in his right lung that had a chest tube draining it, and he had just suffered a hypoxic brain injury, that they thought had left him severely brain damaged.

We had a care conference on July 1st. That was a turning point for us. I had demanded that Dr. Hawkins, the head cardiothoracic surgeon be there. I knew him again from working at the hospital, and I knew that he was the best. Besides the fact that they had nearly killed my baby from their neglect, we also caught the cardiology team in a lie at the care conference. They had been telling us that Jax was on the waiting list for his open heart, and that they had been discussing him in their weekly meetings with the surgery team. But when we talked to Dr. Hawkins, he had never heard of Jax, so we know they weren't discussing him in those meetings.
Dr. Hawkins saved us. He said he would do whatever needed to be done from now on. He was in charge! The nuerologists said he couldn't have his open heart for at least two weeks. They needed to give his brain a rest before they put him on bypass. So then we had to decide if he needed surgery to try and close up whatever was leaking in his right lung and causing the chylothorax. This was a risky surgery, because they had no idea were the fluid was coming from. It would be a guessing game for Dr. Hawkins. But they couldn't leave him on TPN and lipids for another two weeks, so they decided on surgery, and it was scheduled for July 5th. So we spent our 4th worrying about another major heart surgery for Jax in just two weeks. We brought the boys up to the hospital and watched fireworks from the 3rd floor balcony. But Jax once again did amazingly well with the surgery. And he now sported two 4 inch scars, one under each armpit, and if you look at his x-ray, you can see were Dr. Hawkins went crazy with the staples, making sure he got everything!

The surgery seemed successful. 5 days later, his chest tube was not draining any fluid, so they pulled it. Two days after that they decided to try and extubate him again before his open heart. This time they extubated him straight to bi-pap. It was still touch and go, and there were a few times he struggled and they wanted to re-intubate him, but he held on!

They left him on the bi-pap 23 hours a day. He had an hour off for his CPT, and for mommy to get in her snuggles. My baby was getting huge before my very eyes and I could count on one hand how many times I had held him. For 10 days he stayed on the bi-pap, and it was the best 10 days of this hospital stay!


On July 18th, Jax finally had his open heart to repair the AV canal. The longest 8 hours of our lives in the waiting room. Everything had gone so wrong the last few months, that we expected bad news. But every time they updated us, he was doing fabulous. Praise the fantastic Dr. Hawkins for saving our baby yet again!


Because his little lungs were so sick, he stayed intubated for 11 days after surgery. His chest tubes got pulled, and his scar started to heal before he was ready to come off the vent.


His little lungs were in bad shape. We wondered if he would be able to stay extubated without the help of bi-pap. After all, he had been on the vent for the last 107 days! After 4 days extubated and doing ok, we wondered if maybe now our baby was getting well enough to go home soon! The surgery seemed to help his pulmonary hypertension enough to keep him extubated. Although I never knew what his pressures were during those 4 months. I was new to all of this, and I didn't know what the numbers meant for pulmonary hypertension. And no one ever told me. He had been off and on nitric during those 4 months, but I now know that they never bothered to get accurate pressures on him. (And people wonder why we want out of this state and away from this hospital!)
But he was doing fantastic! This is the first time he had been on his tummy in 4 months. The first time someone did physical therapy with him, and really stretched out those limbs. On July 30, there was actually talk of leaving the intensive care unit. The unit he hadn't stepped foot out of, except for surgery and scans, for 4 months. Finally we were ending a month on a good note. We still didn't know how delayed he would be from his brain injury, but finally there was talk of actually getting to go home!!

I love the 4th of July. Not only do I love the fireworks, and going to Park City. But I always look at Jax and remember the 4th of July in 2006, when we didn't even know if he would survive. I will always remember watching fireworks from that balcony, with other families who were stuck in the hospital. I just kiss, kiss my boy every 4th of July, and thank God for him!!