June of 2006

Continuing our anniversary of Jaxson's long hospital stay, I didn't go into much detail in May, but not much happened in May. June 4 years ago was a hell month for us! I didn't take many pictures, but there was a lot of sadness in that month, and the camera sat forgotten most of the time.
Because Jax was there for so long, he had 4 nurses that were his primary nurses. They had him every shift they worked. One of our night nurses, Ruby, was always taking pictures of Jax with the hospitals Polaroid camera. (Yes, this was before they got digital!)
This picture Ruby took, and its my first time holding my baby since May 7, this picture was taken June 3!

At the end of May we finally had Jax infection free. We begged the cardiothoracic surgeons and the cardiologists to fix his heart now! We knew if we didn't do it soon he would catch another infection. We also knew that he wasn't going to be extubated until his heart was fixed. And the time spent on the vent already was frying his little lungs. We didn't have much time! This was our first bad experience with the hospital. They kept telling us the surgery schedule was full. How could they not bump a child back that wasn't as sick as Jax? We know its been done before, but they would not do it. They scheduled surgery for the 12th of June.

June 11, Jaxson spiked a temp again. At the time I didn't think a whole lot about it. It wasn't a super high temp, so we didn't start doing blood cultures or anything like that.

But of course the next morning on our way to the hospital before surgery, the nurse called us and said they cancelled the surgery! The cute little nurse practitioner for CT surgery, who I knew well because I worked with her on my unit, came to talk to us about it. I could tell that it was killing her, because we were good friends, and she knew how badly he needed this repair. I sobbed to her, telling her I was never going to have my baby back. She told me the risk was just to high, they can't put him on bypass with a possible infection somewhere. We were heartbroken!
Life in the PICU was interesting. Sedation drugs no longer worked, so he would be wide awake, moving around. It was like the vent was a new accessory he had!

Jaxson's cardiologist decided that we should try to close his PDA, to see if that would help his respiratory problems, and get him ready for his open heart. He took him to the cath lab, and found that his PDA was huge. He was unable to close it in the cath lab, so they scheduled his first heart surgery. Jax developed a chylothorax in his right chest, so a chest tube was put in. They couldn't figure out how he got it since its usually caused by surgery. They think that the incredible pressure in his chest just caused leaking. So they put him on a fat free formula, which meant my breastmilk was no longer used. That's when I decided to stop pumping. There was no way that even when he was extubated, that he would ever nurse again. His PDA surgery happened on June 18th. It was nice and uneventful. He now sported two chest tubes, one on each side!

Closing the PDA did not help, they extubated him a few days later and he once again failed. On June 24th, they started a new med to try and dry up the chylothorax. He was no longer getting fed, they were running TPN and lipids for nutrition. The med they started to try and dry it up, caused an allergic reaction, and he started having drug fevers.

On the morning of the 25th, I got there about 9am. I knew something was wrong because he had the whole team around him. He had a high fever, causing his heart rate to be around 200. He was on heparin, and was oozing blood from all of his IV lines. So they stopped all of his IV's. Which meant he was getting no nutrition in his little, fever ridden body. Soon after I got there the lab called and said his glucose was 17. That started a frenzy of pulling glucose off the crash cart to give to him. They think his glucose bottomed out to 0, because of the time it takes the lab to run it and call us. That was the main thing that caused his brain injury. An hour after the glucose incident, they let his temp get to 108.0! The combination of these two things caused a lack of blood flow to his brain. I called my ped that night and left the most horrific message for her. I can't imagine getting that message. I sobbed that they were killing my baby!

It would take a few days to see the full extent of his injury, because it was a diffuse injury, so over a few days it gets worse. The MRI on day 3 showed brain damage over his entire brain! Heart surgery talked stopped, and our cardiologist asked us if we still wanted to repair his heart, or just take him off life support.

That's how June ended. Jax was the most bloated he'd ever been from the brain injury. He no longer was awake, and we had to decide what kind of life we wanted for Jax. Nurses cried to me, saying they couldn't believe this had happened. The nurse in the picture was one of his primary nurses. Dear Pam, my all time favorite. She was hilarious, but also serious when she had to be. A 24 year PICU veteran. I couldn't have done this horrible 4 months without her!

And do you love the Christmas pictures? It was a disposable camera the hospital gave us, with Christmas sayings on the bottom. We didn't know that until we developed them!