Living "normal"

We've been struggling the last couple weeks with Jaxson. He's fine, he's not in the hospital, and he's not sick.

Its the other struggle. The struggle with no matter how hard we try, we will never live a normal life with him.

Every once and a while it just hits a little harder, and you get in that funk that you have to break yourself out of. A couple of weeks ago we were at Universal studios. We had just gotten there, and got on the Studio Tour. Its a 45 minute ride through the backlot, with some cool special effects demonstrations. You can't take an oxygen tank on that ride because of the fire effects. We took him off his oxygen, because he's been doing so well anyway, and he's been on the ride before with no oxygen, and off we went. Ray was holding him, and it was a hot day, and suddenly I noticed that Jax was awfully white. I kept my eye on him as he got more lethargic, and more gray by the minute. I took him from Ray, layed him on my lap and took all of his clothes off. We were sitting in the front, so I could have easily grabbed the driver and told him we needed help. But I wasn't quite panicked yet, I knew he was breathing, and the ride was almost over, so I kept a close eye on him and waited. When the ride was over I put his oxygen back on and put him in front of a misted fan. Soon his color came back and he was good to go. But man, that could have been bad, and it could have been quite the drama had I made the driver stop. I'm talking the paramedics coming out to the ride in the middle of the backlot, with about 100 other people on the tram watching. It just proved to me that oxygen will always come with us, it will never, in Jax life, get to stay home.

His heartrate has been higher as well, so I'm wondering if we shouldn't be taking his oxygen off as much as we have. Like his ped said, even though his sats stay ok, its not just about oxygenation, its about circulation among other things. He has cardiology in September, so we'll see what she says.

I'm also in a huge battle with Jax old nursing company. I'm currently fighting a 20,000 nursing bill. Some of it should have been covered by my insurance, and the rest is their fault. My contact there kept telling me he was pre approved, even though he'd gone over his 90 day limit. Now its gone to collections, and the you know how nice they are on the phone. The guy tells me he has a son with medical problems, to which I told him he was lying. Because if he dealt with this every day, I guarantee he wouldn't be in the business of calling people who owed medical bills! I just didn't know where to go next with it, because I keep telling them I'm not paying it, lets take it to court! But luckily I have some friends that told me to call my state insurance board, and they should help me take care of it.

Yesterday we tried going to the beach, we didn't leave early enough, and the beach was packed! There was no parking close, and with Jax, we can't walk a long way, because we have to leave the stroller in the car. It is impossible to push a stroller on the sand, and its impossible to carry a dead weight 6 year old with all of his crap from far away. So after wasting a few hours driving around looking for a beach, we finally gave up and went home.

If he's not pulling his feeding extensions off and making his stomach bleed and leak formula all over, he's vomiting green bile all over his own face, and probably down into his lungs, because he lays on his back. I would like to know why we aren't fixing his nissen. Why even on two meds his stomach acid is so strong it burns paper, and why he continues to retch and vomit.

After I finish this post of my frustrations, I'm going to leave it behind. I'm going to go put Jax in the tub, so he'll smell delicious again. Then we are starting a new week fresh, and ready to battle whatever comes our way!