The plan for Jaxson...kind of

I'm going to try and explain what we are doing with Jax. I want to explain it all, and go in order, so bear with me. I don't have full details yet, I was expecting a couple of doctors to call today and they haven't yet. But I thought I better clue everyone in because people keep asking.
You know he had the MRI and it didn't show anything we didn't already know. You also know that for some reason our cardiologist now thinks he may be able to balloon open the SVC. I sat down with my ped on Friday and we had a long talk.
There are some main questions. What is causing his increasing respitory distress that is in turn causing his pulmonary pressures to be up? His cardiologist doesn't think its the SVC. But we think its secondary to the SVC. We think that the extreme puffiness in his cheeks and neck are causing his airway to be more closed off. Of course that would explain the respitory distress.
Our cardiologist definitely wants to take him to surgery to measure pulmonary pressures and look at his pulmonary arteries to see if they are narrow. And get a general look at his valves and remaining VSD. He then wants to measure the pressure above and below the SVC. If the pressure above the SVC is more than 2 or 3 millimeters higher than the pressure below, he will try to balloon it open. So we won't know if he is going to balloon until the middle of the whole procedure. If the pressure is not higher, then its not the SVC thats causing the puffiness. He has other major veins in his upper body that are blocked, that could be causing harm as well. Plus, there are some major risks if we decide to try and balloon it. I've said those before too. A clot could break loose and travel to his heart or lungs. If the SVC is not the culprit,we can then decide if we want to go to Boston and have them look at those other veins as well.
My ped has gotten a team of his cardiologist, pulmonologist, and ENT. They want ENT to bronch him while he's under and look at his airway to see if its more narrow than usual. I'm praying they don't want to trach him if its narrow, but if its causing respitory distress and high pressures, than we have no choice.
I'm waiting for cardiology to call me so I can ask some more questions. I think they are going to have to go in through his groins and also his upper body to get the pressures below and above. This is probably going to be a long surgery. I called today to schedule, and the earliest they had was Oct. 22. We scheduled it but I'm going to talk to his cardiologist about moving him up. I know he wants to start meds that he has to start while he's in surgery, and I don't want his respitory status to worsen over that much time. I'll let you know when it gets scheduled.
We are also going to try bi-pap instead of c-pap since he was desatting. We are hoping this will help. I remember when he was in the hospital he was always intubated from c-pap. Only bi-pap he was able to come off of. Pray it works, I don't know what we'll do if it doesn't. I had to turn him up to 2 liters Saturday night to keep his sats above 90.
So there you go. I hope you understand it all, I'm still trying to myself.

Jax with his monitor that nowdays is permanently attached to him. You know he never keeps his O's in his nose, and his sats plummet when he pulls them out.

The boy and his puffy face.