Jaxsons Fight

Still working on the tabs at the top of my blog. One day, they'll be done....hopefully!
Also going to change my header a bit. Trying to find a good title that still includes Jaxson's fight. Remember, I'm not all that creative!

This is an update post on all the boring stuff. The princess had her follow-up ENT appointment after failing her sleep study. She is having her tonsils and adnoids removed Thursday, Feb. 3. She'll stay at least overnight, longer if she refuses to drink! (I forget what a life saver the g-tube can be!)

Jaxson, of course, is a lot more complicated! After I posted that we were going to admit him to tweak the vent, and see a new pulmo for a second opinion, things have changed!
I talked to my pulmo over the phone and told her the plan. She said she was fine with me seeking a second opinion, but she thinks admitting him to play with the vent is a really bad idea for him right now. After talking to her for an hour, I remembered why I love that women, and getting a second opinion for pulmo is now off the table for me. She explained what she thinks is wrong with his lungs, and why cardio needs to step in. I'll try to explain it in laymen terms.
The crap in Jax lungs is not atelectisis, its opacities. Which means its not a problem with properly ventilating him. Messing with the vent will do no good. What it means is that he has major back flow from his lungs back into his heart. Its either from an old clot that has clotted off a vein near his heart, or all the veins he's clotted off in his chest. Whatever it is, blood is not flowing like it should, causing fluid to back up in his lungs. No neb, or vest treatment is going to help this. Cardio needs to look at his heart, and his veins, and see if they can find the problem of the narrowing. The only way to do this would be in the cath lab. I don't want to take him to the cath lab here, they've already proven they aren't good at being thorough, and I'm not putting him through it for nothing. I talked to my ped yesterday, after she talked to pulmo, and she wants to think about this for a bit, and talk to a few doctors first. I completely understand. You see, if the problem is what pulmo says it is, its not good news. Everything to fix this problem would be extremely risky. If it can be done at all. We are talking probably having to put him on bypass, to work on opening up his veins. If they rupture a vein, he dies right there on the table! So we'd have to weigh the risk of surgery, over the risk of leaving it. If we leave it and he gets really sick and ends up in the PICU, then we can't fix it, he would be too fragile for surgery, then we are screwed anyway!
This is what I think....everything we have been doing since we found out he clotted all these veins off, has been a band aid on the problem, but not the fix. Traching him, venting him, they are all band aids that fix the problem for a little bit, but then it comes screaming back!
So this mama's not playing games anymore. I'm going straight to the top. I've contacted the top two childrens hospitals. Childrens hospital of Philadelphia, and Boston. We'll let them look at him, and see if they can tell us what the problem really is. CHOP has already contacted me, and a specialist is going to call me in the morning to discuss his case! We'll go wherever we have to go. Even if we have to eat Ramen every day to pay for it!