Stuff

Oh friends my head is going to explode! I feel like I'm being pulled two different directions by two different doctors. Although they agreed to work together with this problem, I still get different perspectives.
My pulmo thinks this is a huge problem. My cardio thinks its not so bad. I think pulmo is more worried that it will progress if we don't stop it now. I'm pretty sure we are going to get the vent. I'm not to excited about this. It just makes me see that his health is declining rather than getting better. The vent is a big step, and not one I want to take. I called about our only waiver program we have. Jax is on the waiting list. They told me he was number 15! That's actually farther behind than he was a few months ago. Because if a vented kid comes on that will bump a regular trach kid back. So basically we will sit on the list forever, unless he gets the vent. Even if he gets the vent he still only moves up to number 11. So we are pretty safe in saying he won't get the waiver program until we move! That makes getting the vent even more worrisome. Because we still will get NO nursing hours!

*Sigh*

They did a stool test today. This will tell a lot. Here comes the medical garb again. If he does have venous congestion causing the pressure to be high, he will be dumping extra fluid into his gut. So if this stool test is positive, its not good news. He will go right to the cath lab and look at his venous system. There is not a lot that can be done with those veins, and what can be done is usually super risky! If you start playing with veins and closing them, you could rupture one, or close one off accidentally that is vital in blood flow. That puts us between a rock and a hard place. If the test is negative, they will probably start the vent and see if that helps.
My ped asked if this new, scary stuff that's going on with Jax will make me change my mind about going to get Makayla. No way. I still want my girl! And as horrible as this may sound, if I lose my Jax, I need a Down syndrome child in my life. Of course she will never take his place, I've been wanting a girl for twelve years now! But I still need that presence in our lives as well as the sweet, pink, girl I've always wanted.
So for now we wait for this test result, which could take a couple of days to come back.

We have been looking into superleague baseball teams for Carter. Its hard, because there is still so much politics. A lot of these teams have tryouts, even though they know they are going to pick kids they already played with during the regular season, even if they aren't the best! He had a tryout tonight, and of course yesterday he starts having major asthma problems! I don't know if he caught a cold or if its just the asthma, but we started pushing steroids and breathing treatments in hopes it would help. It seemed to, a lot. He did great at the beginning of tryouts, but then the rain started, and then the lightening. Finally they called it, and we go back tomorrow to finish! That's good for him because it gives him another day of steroids!
But the boy doesn't stop, even if he is wheezing like crazy, he keeps playing the game he loves!