I talked to pulmonology today about Jax desating on his c-pap. The only thing she can think of is his nasal airway is so narrow that its not getting through. So she wants me to find this nasal spray for which I can't even spell the name. She is hoping it will open up his airway a little. If it works they will write a perscription for a nasal steriod. I have run around everywhere today trying to find it. I may have to run all the way up to the hospital pharmacy to find it.
I can't understand the medical world. We are able to transplant organs, help people with just half a heart, but they can't figure out how to open up the nasal airway besides taking the adnoids out. Which he can't even have done. Or that they can't figure out how to open up his SVC. With all the things they can do for the heart. Everything we need just seems unfixable. I'm having more and more of these heart palpitations, with headaches that go along with it. I'm not sure what's causing what, but they always come together. I talked with Heather for a while the other day, and she convinced me that I just need to give in and go get it checked out. I called my doc, who I've never even seen before. I know, I haven't been to a doctor besides my ob/gyn since my pediatrician. She said since I haven't been seen there yet they have to look at my info. That it could take two to three weeks to get back to me just to schedule an appointment. Oh well, with Jaxson's declining health, and the need to go clear accross the country to do a risky procedure for him, my appointment is the last thing on my mind. I know I'm losing steam though. Jax sleep is getting worse and worse, therefore my sleep is almost nothing. But I keep chugging along waiting for Boston to call with an appointment. Because I have yet to have that small voice tell me that Jaxson is done fighting, so fighting we will do.
I was excited for our Buddy walk this year. Although I don't know if we'll even be here to do it, or if Jax will be able to go, he's getting worse and worse by the day. His lungs are filling with fluid. He has coughing fits that are a joy to deal with, but we put a team together this year, and I really want to go. I'm not worrying to much about raising a bunch of money. Not that I don't want to, but I'm trying to get to Boston with Jax, so that needs money more than anything else right now. But if you want to donate, or just check out his page, click here.
This is whats going to be on the back of our t-shirts. The front will just have the team Jaxsons fight on the pocket. I can't wait to see them.