A plan and a smile!

Yesterday's pulmonology appointment was interesting! A lot of stuff learned, a plan of sorts is being set in motion.
I'm going to try and explain it all without totally confusing you! I'm still a little confused. There will be a lot of medical mumbo jumbo!
My pulmo explained Jax echo better than his cardiologist did. She's as confused as me. In one letter is says "no significant change", and on the report is says "significant change". It looks to her like a significant change. It says his right ventricle is extremely thick, and there's flattening of the interventricular septum. I'm not exactly sure what that is except that its flat from the pressure. His pressure measured 50, normal is high teens to 20. We've been much higher than 50, but its still not good, and it will only get worse unless we take care of it. Pulmo thinks that cardio is doing nothing because he is waiting until it gets worse. She also thinks he is worried that he'll get in there and not be able to fix anything. Then he has to give us that bad news. She has a feeling that its not straight up PH (pulmonary hypertension) The trach should have helped that. She's a little worried that something else is causing it. Something like obstructions in his venous system. She is thinking that because of his clotting disorder that has caused him to block all of his major veins in his upper body. She thinks there is a lot of congestion in there, and vessels are going every which way. This might not be an easy problem to fix. She thinks he needs to go to the cath lab, have his pressures measured, try PH meds while he's under, and look at his venous system. I told her that I don't want that done here. Our last cath our cardio did he was supposed to do those things and he didn't! He didn't even get accurate pressures. I'm done with the doctors here, and I want to take him elsewhere. We talked about Boston, just because of their state of the art cardio team. But I also want to look in California because that's where we want to be anyway. She agreed, then she went out and called my ped. When she came back in she said she looked at some of his x-rays from July. She said they weren't pretty. It makes me nervous when she says that because his typical x-ray is not pretty, so this must be pretty bad. She said there was a lot of infiltrates, suggesting he's not breathing deep enough. She said the vent might help that at night. But again, if this is not straight up PH than the vent will just be a bandaid, not fixing the real problem.
She also said that with everything going on right now with the adoption, she asked me if I would let my cardio cath him before we go out of the country. She will talk to him and make sure he understands what needs to be done, and how important it is. Then when we get Makayla home we can go out of state.
This makes me nervous because although its a relatively easy surgery, its still surgery. And we know that Jax is the king of complications. I don't need that right before I go out of the country. I've already found some very promising doctors at Childrens hospital Los Angeles. And I'm going to get in contact with them. I'll just be waiting for pulmo to call me and tell me the game plan with the cath lab.
Oh this makes me nervous to have this happening right now!!

But on the brighter side, look at the smiles my baby is giving! They are getting bigger and bigger every day!! Just don't mind my bedhead!



Just for those that may be new to our blog, the reasons why we are so excited about smiles with our 4 year old is because he is not a typical 4 year old. A brain injury has left him unable to walk or talk, or even sit up. These smiles are just coming back after 3 years. We rejoice in the little things!!