Jaxsons Story

Jaxson was born November 20, 2005. After a difficult pregnancy, he came into the world screaming! As soon as they layed my baby on my chest, I knew he was different. They let me hold him only for a second, because they said he was having respiratory problems. As I held him I mentioned that he looked "Downs". After the nurses took him away I looked at Ray and told him I thought he had Down syndrome. His response was ok, lets do this!

I don't know why, but neither of us went through the grieving period. Not even when we found out he had a serious heart defect. I don't know if its because I worked in the childrens hospital. I knew what the heart defect was, and I had taken care of many DS kids that had it repaired. We just jumped right in to parent mode once again. He was transferred to the childrens hospital for further care the day after he was born. There he was officially diagnosed with AV canal, PDA, and pulmonary hypertension.

He only spent 9 days in the NICU. By far our easiest hospital stay. He had major respiratory issues because his heart was mixing so much blood. But he managed to get through his first Christmas at home.

January and February both he spent time in the hospital for respiratory distress. In March, we hurried to California to get in a trip to Disneyland before his heart surgery.

Days after we returned for our trip, in April, 2006, again he was admitted for respiratory distress. This time it continued to get worse for a week until he was rushed to the PICU and intubated for respiratory and heart failure. Everything just went downhill from then on out!

 He had a heart cath where they tried to close his PDA without success. We tried to get his heart surgery scheduled, but it was cancelled twice because he would get infections. It was a vicious cycle. He couldn't get out of the PICU until his heart was repaired. But being in the PICU with so many lines meant constant infections. They decided to do a less invasive heart surgery and close his PDA in early May.  3 days after surgery he suffered a hypoxic brain injury from the staff letting his glucose bottom out to 0 and his temp rise to 108!

We were told his brain damage was severe, and we should probably just take him off life support. We refused! We could see our baby in his eyes and movements, and we weren't giving up on him! We demanded the head heart surgeon, and he took over Jax care. He did a heart surgery to try and close some leaky ducts in his chest, causing fluid to be in his lungs. After the surgery and with some aggressive treatments on his lungs, we were able to get him off the vent and onto bi-pap to wait for his brain to heal enough to have his heart repaired.

10 days after being on bi-pap, he had his full heart repair on July 18, 2006.

Because of his sick lungs, he remained on the vent for 10 days after surgery. But slowly he finally started to improve!

Jaxson finally went home on August 7, 2006, after 4 months in the PICU. He had been intubated for 3 1/2 months, had 4 surgeries, over 200 procedures, and suffered a deadly brain injury. But he was home, and we rejoiced every day we had with our warrior!

Over the next few months he had a few surgeries and hospital stays. But the biggest thing was the seizures started. They slowly got worse and worse, and we tried med after med. They were coming from every part of his brain, because his whole brain had been damaged. We were slowly losing our baby once again.

In January, 2008, he went into status, or constant seizing. They tried all the big gun meds, but even propofol didn't work!

We had to put Jaxson in to a coma, and totally stop all of his brain activity. Once it was stopped, they would slowly wake him back up and hope the seizures had stopped. But because you are stopping all brain activity, his systems all started shutting down. He blew up like a balloon, and they were unable to get his lungs the oxygen they needed. Once again we thought we were saying goodbye to our warrior boy.

But again he pulled through! The status stopped, although he continued to have seizures, and still didn't gain any strides in his developments. He was still like a newborn baby.

October 2008 he was admitted for fluid in both lungs. He ended up with two chest tubes, and they thought he had gone back into status. That was when we found his clotting disorder. They tried to put a picc line in his left arm, and found a huge clot! They scanned his chest and found that he had clotted off all of his major veins in his chest! He was diagnosed with antiphospholipid antibody syndrome, and will require blood thinner shots for the rest of his life. After this hospital stay was when I started my blog.

After starting this blog we met so many wonderful people, and made some great friendships! He had many more hospital stays for small surgeries and respiratory viruses. But we also made many trips to visit friends!

In 2009 he started having severe respiratory distress problems. Because of all the veins he clotted off, he pulmonary pressures were rising fast! We finally decided to trach Jax in October 2009. Probably one of the hardest decisions I had to make for him!

Even after he was trached, he still continued to have respiratory problems. We knew that his lungs were severely scarred, but this was something more. In August 2010 he had respiratory and heart failure and ended up in the PICU fighting for his life once again.

That was when they finally started him on pulmonary hypertension meds, and put him on the ventilator at night when he sleeps.

Right now Jaxson is still having severe lung problems, we are now looking out of state for treatment and perhaps a new diagnosis.
Developmentally he is making small steps forward. He is finally smiling again, he rolls over frequently, and he is starting to grab things in his hands. We will continue to help him fight, and have as much fun as possible along the way!

There is a video on the sidebar, showing Jaxsons first 3 years if you want to check that out!