More appointments, no more answers.

This is a novel of a post tonight!

A lot of appointments and stuff to talk about with Jax. He had an appointment with GI today. He hadn't seen her since June of '08, so a lot of stuff for her to update. She said he does have dysmotility. She also said that its better to keep him on this formula, and not the pre-digested stuff because....reasons that even I didn't understand! He is relatively stable GI-wise. His feeds have to be run very slowly to prevent gagging and wretching, and he still doesn't poop on his own. A liquid suppository every night keeps him cleaned out. But this is stuff we can deal with, stuff that really can't be fixed. We can live with that, been doing it for 5 years now. She asked how he was doing all the way around. I told her about his chest x-ray and lungs not looking good, even with the vent. I told her that I was considering seeing another pulmo, just to get a second opinion. She said second opinions are always good, but that my pulmo is the best, and we won't find one better. I definitely agree with that. I don't like any of the pulmo's at the hospital, so I wouldn't even know where to go! I told her maybe what I needed was a second opinion in cardiology. Pulmo thinks his lung problems are heart related, cardio says his heart is fine. GI didn't like how his heart sounded when she listened to him (she has a son with a major heart defect)
So do I have you totally confused yet with all these different docs and opinions?

After GI we went to our ped to get a follow up x-ray with the increased vent settings. The x-ray actually looks worse than the one in December!
I'm starting to freak out here.
The problem is right now he looks ok. He is getting a little bigger, and he's doing some more stuff developmentally (thanks to a certain princess!) But if your with him every day, you see the subtle stuff. He has periods where his color will just drain from his face. I will check his sats a billion times, because seriously, he looks scary. He turns blue when he cries, and when his oxygen comes off. He is sleeping more. He is now taking another nap later in the evening, right before bed. I'm not kidding when I say if he gets a cold, we are in deep doo doo!
My ped called pulmo today after the x-ray, she said she doesn't know what to do. She doesn't know the next step, she wants us to talk to cardio. I'll tell you what cardio is going to say. He is going to tell me that his heart looks fine, but that he can take him to the cath lab to get a better look if we want him to. My ped listened to his heart today and agreed that his murmur sounds much louder.

I think I need some fresh faces to look at Jax. I need to start looking for specialists in Cali, where we are hoping to move this spring. Boston is always a good option, because lets face it, they are the best in just about everything!
For some that have asked, he has lost a little puffiness in his face. Now that we know that its fat and not fluid, we have taken down his calories in hopes to get him to a lower weight. Its not easy to breathe, and move, when you are a chunk in your face and chest. (Still have no idea why he only gains weight there!)
The other thing people have asked is why don't they know what to do with his lungs. Here's the problem...Jax doesn't just have pulmonary hypertension. He doesn't just have congenital heart disease. And he doesn't just have reflux and aspiration problems. He has all the above, plus lung damage from being traumatically intubated a billion times, and on high vent pressures when he was really sick. All these together are a bad combo, and I think some docs just don't know what else to try anymore.
I also had a spat with his ketogenic dietitian. I had emailed her asking if the diet contributed to the fragile bones. She said that if they aren't on the right supplements, that it could happen, and that Jax didn't get seen in their clinic as much as she wanted!
I freaked. I told her I'm not a mind reader. No one ever told me that he had to be seen every 3 to 6 months. I didn't even know there was a clinic. The nurse practitioner that runs the diet never once called me, in the almost 3 years he was on the diet! My ped was furious as well when I told her. She tried to keep in contact with the dietitian. She rarely returned phone calls, and so my ped did labs herself and supplemented him as best she could! Right now we have doubled his vitamin D, and I need to be better at getting him in his stander every day to work those legs.

Sorry if I have you totally lost, or totally bored for that matter!
I'm just worried about my little man, and trying to find the right docs to try and help him as well!