I love new discoveries!

Last night we had a neighborhood pool party. It started late because it had to be after the pool closed to the public. We decided since it wouldn't be as crowded it would be a great time to put Jax in the pool for the first time since he was trached. Jax loves the water, so I'm not going to take that away from him because he was trached, or because he can no longer come off his oxygen long enough to swim. We'll compromise! The bad part was the pool wasn't as warm as normal, so he didn't like it one bit, and it was only a two minute swim. Oh well, we'll try again!!


I have a new discovery for you trach moms! I found this on our friend Colton's blog. I noticed in a picture of him a new HME that had an oxygen attachment. I had to know what it was, because the normal oxygen attachment we have is the worst. The tubing comes off the side, and every time Jax puts his arm up he knocks it off! Colton's mommy sent me a couple to try. And my home care guy is going to order me some. I can't believe it. I just hope they don't realize they are more money and decide we don't need them. Its not medically necessary, blah blah blah blah. I'll take them while I can because they are fabulous!
Check them out...
They have an oxygen attachment right on the nose. And a little trap door you open so you don't have to take the nose off to suction. I still take it off, habit I guess! And the best part, the tubing is not on the side where he can get his little hands on it.


The old oxygen tubing.

I almost had a heart attack yesterday. I got a letter from my insurance stating that Tobi was no longer going to be a covered med! I about died. Tobi is a very overpriced med, that has proven to be very helpful for Jax. It said that only CF patients would be covered. Hello, there are other lung diseases besides CF. I immediately called my insurance. The lady told me I was fine, that the letter said they would no longer be covering it for sinusitis, but other lung issues were still covered. Well, that's not what the letter said, but as long as its still covered, that's all that matters to me! Why we must fight so hard to get things our children need to survive is beyond me!

My ped also told me yesterday that Jax was going to give her a heart attack. I guess heart attacks are going around right now ;) Something is not right with him and she's bound and determined to find out what it is. Respiratory-wise he is doing ok, I'm still having to turn him up at night, but during the day he is fine. Sunday he fell asleep at 1:00 and slept until 7:00! He was cranky the rest of the night, and when I put him to bed at 10 he still went right to sleep. He is still on continuous feeds. We haven't even tried to go back to bolus because I'm still pulling 50 cc's out of his belly, and his feed runs at 40 an hour. So he's still not moving things along. His albumen level has steadily gone up, which is a nutrition sign. That would explain the new puffiness. When your albumen level goes up, you leak fluid into your tissues. I guess that's better than a cardiac reason of retaining fluid. But he is already on way more calories than a normal kid his size, so why is his albumen level high?
More labs are ordered for today. I don't know how much longer we are going to get blood out of this kid. I'm surprised we've gotten is so far. My ped won't listen to me and put a port in. She thinks the infection risk is to high. Well its not as high as a line, and he only got line infections in the hospital. When he was home with a line he never got a single infection. I am much more vigilant than hospital staff, trust me. So one of these days we are going to need labs quick and have no access to get them. But nobody listens to me!
We need to figure whats up with him before I go out of the country. My ped agrees and we are working hard to figure out what it is!