Jax has been super super sick and I haven't had time to update his facebook page, let alone the blog.
The crazy thing is it was a simple Trach bug, that kids with trachs get all the time. But this time it went into his lungs and caused pneumonia. He acted totally fine, like he normally does with tracheitis, but his oxygen need was getting higher and higher and his work of breathing and respirations were too. We hit the ER only because pulmo couldn't get him into clinic, and we needed tests. I didn't feel like he needed to be admitted, he wasn't so sick I couldn't do it at home. He was tolerating feeds, and I had all the respiratory support at home. But I lost the fight to go home. He is known to have drug resistant bugs, so he was started on two new IV antibiotics. Because they were new they wanted to make sure he didn't react to them, we had to stay. So we spent 5 days inpatient that could have been spent at home. He was on 4-5 liters the whole time, and that is totally doable at home.
But Friday on the way home from the hospital he don't tolerate the car ride well. He coughed and coughed and desatted. I got stuck in traffic when there was a fire on the freeway. I was over in the toll lanes and couldn't pull over. His sats kept dropping and I finally had to call 911. They helped me find a pull out on the left, and a CHP officer drove me down the shoulder past the accident so I could just get him home, once I got his oxygen back up. The officer was fantastic!
After we got home he just tanked! His oxygen need went up to ten liters, which is as high as I can go at home. Even on the ventilator he was breathing around 60, which is crazy for him. Pulmo didn't want to admit him if at all possible because they hospital is crawling with rsv and the flu. Since he didn't have either we didn't want to add that to the mix.
Sunday night I was out at Disneyland with a girlfriend that was visiting from out of town. I got a phone call from tanner that jax had a grand mal seizure and wasn't breathing. Mondo called 911 while Ray ruscesitated Jax. Disneyland is literally ten minutes from Jax hospital, but the paramedics thought Loma Linda was closer. I told them over the phone no, it's not closer, that I didn't want him there and I wanted him at choc where the docs knew him.
So instead of being right by the hospital I had to drive 45 minutes to get to my son!
Then I almost punched the security guard when he thought I was going to wait in line at the ER when my son was brought in not breathing! Not going to happen!
When I got there he was passed out cold. Versed had stopped the seizure.
We have no idea why jax had the seizure. Out of all the seizures Jax has, he has never had a grand mal that made him arrest. Never!
Since I wasn't home I can't speculate on what happened first. Being sick can lower your threshold with seizures, but I still would never have imagined he'd have a seizure like this!
Now over a week later he is finally almost back to baseline.
What worries us is how sick he got from a small bug. He's never been that sick from tracheitis before. It has us
really worried about the bigger bugs like rsv, which is still running rampant here! So we are just being super cautious with our fragile little warrior boy! We have to keep him healthy and happy!!