Brutally honest!

I started this blog mostly for a diary for me. For people to keep up to date on Jaxson. I met many great friends. People that have been down our road, and re-connected with the DS community. A lot of our new readers came here to follow our adoption journey, and Arina's new life here. This is a horribly long post about Jaxson, so bear with me!
I had a nice, long chat with my ped yesterday. She wanted to meet, go over Jax from head to toe, and make sure we were on the same page before the care conference. Especially because she heard that I felt that she was giving up on Jax as well.
Me and my ped have a great relationship. We've been to hell and back together, so we work well and are quite close. We got to the hard questions. She asked me if maybe seeing Arina was making me think more about Jax brain injury. Making me hate the hospital all over again. It was a great question, but I can honestly say no. We had our mourning period after Jax brain injury. It took me over a year to get back into the DS community. I felt like my child wasn't a DS kid anymore, he was a brain injury kid. I was tired of being asked why he couldn't even sit up yet. Starting this blog was when I really accepted what happened to Jax, and was ready to dive back into DS. If anything, having Arina home is more enjoyment. We get to do things with her that we couldn't with Jax, and its nice having that in our home again.

Basically it boiled down to his lungs being what I was most worried about. She told me she was worried about me going to one of these big hospitals, because they take out of state kids, run tests on them that have already been done, so they can charge for it. Its a huge money-maker for them. I understand her point, and I am putting that in the back of my brain.
But after I left, I thought of a bunch of stuff we didn't talk about, and I didn't feel like we were entirely on the same page yet. So I called her at 5:30, knowing she would be in her office doing paperwork. I asked her some more brutal questions. I asked her how long she thought he was going to live. I asked her this because I wanted a sense of how she was treating Jax. Treating him like a child, or treating him like a medical statistic. She said she didn't think he would live as long as he has. She said that if he keeps going on the track he's on, she would say 4 years, 5 at the most. Also remembering that a respiratory illness could take him at anytime. My next question was did she think I was over reacting about his lungs. She paused for a minute, and said yes, she did. Then I knew we weren't on the same page!
She said that 1/2 to 3/4 of a liter of oxygen wasn't that much, and that if he was higher she would think something was wrong. It hit me that she wasn't understanding me. I told her I'm not thinking about the last few months, I'm thinking the last couple of years. Its been a slow trend downhill with his lungs. I reminded her of how much oxygen he used to be on, what he's on now including the vent. She agreed, and she said, is this what you've been worried about this whole time?
EPIPHANY!!
She finally understood.
She was thinking I wanted to go out of state and have this huge surgery on Jax. A surgery that she couldn't get behind because she thought it wouldn't be good for him. We canceled the care conference, because we don't need it. I'm going to make an appointment with my pulmo, and have the same chat with her. We are still meeting with the palliative care team on Friday though. I would really like their input. They are doctors and nurses too, so they can tell me what they think about him medically.
More than likely I'm not going to go to CHOP. We thought it would be more productive to look for a doctor in California, since we hope to be there by summer, and I'll have to find a doc there for him anyway. I do strongly believe that I need a new person to look at his heart and lungs. Especially after talking to my cardio last night. He called after he heard that we canceled the care conference. I told him about the gradual decline of his lungs, and how we need to get to the bottom of it. I told him that I still believe that it is his mess of collateral veins in his chest causing back flow, not aspirating. My reason is because his gradual decline began when we found the clotted veins in his chest. We trached him, putting a band aid on the problem, but not fixing it. Then we started the vent. Another band aid, never really fixing the problem. Many doctors that I have talked to say that although collateral's are doing the job, they are usually tiny and scattered, therefore inefficient.
He agreed that it was possible!!!!
Ok, this is the guy that said that wasn't the problem to my pulmo, now he's telling me its possible!
Then he went on to say he thought his heart was ok. That he still has a VSD, causing problems with the left side of his heart. He has pulmonary hypertension, causing problems on the right side of his heart. But he thought that was ok for Jaxson. Do you know how I take that?? Its ok for Jaxson because he is a chronically ill child with a short life expectancy. This is why I'm not satisfied with anything this man says.
I understand what everyone is saying about a big surgery. The surgery to fix the vein problem would huge, bigger than open heart surgery. And a lot of doctors say that is too much for Jax. That we are thinking about ourselves and not him. I just want a diagnosis, when I get that, then I will decide what is too big for Jaxson. One day at a time here!
A lot of people say that you just know when its your childs time. That you feel peace. I'm not there yet, and I can only pray that when his time comes, that I feel that peace. I just don't feel like he's done living yet. He is doing so much more developmentally, he proves that he enjoys life, and so for now we are just going to search for the big lung problem, and pray that he doesn't get sick before then.
I'm getting whiplash from all the back and forth. Going here, not going here. Doing this,not doing this. But I guess thats how you problem solve. Think of all the possibilities, and then make a decision. All in all, by the end of the day, we made huge progress! I'm thankful for that.

A few pictures to end this novel. Arina's hair is getting so long that I was able to put it in two pigtails!

Lovin on her Jaxson!