2 week check up

Macsen had his 2 week check up after his pacemaker was fixed. I felt like the whole appointment was one big good bye - I don't think they could get rid of us fast enough. The EP doctor declined to see him even though he needs his pacemaker checked.  We've been seeing the team in heart failure  every 3-4 weeks for 14 months but we can no longer trust that Macsen is in the right hands.
For months after the pacemaker mysteriously stopped working we watched Macsen decline. We watched his labs get worse - his BNP rose, his kidney labs worsened. He was increasingly fatigued. He was miserable - uncomfortable in his own skin, unable to play, to sleep, to grow. His local cardiologist just told us that was just just his heart failure - he never even looked at a single EKG. If he had he would have noticed that his QRS had widened like it was pre pacemaker placement. AND HE COULD HAVE FIXED IT - right then. Instead, now, Macsen has been diagnosed with Stage 3 chronic kidney disease - no doubt bc for months with his heart beating out of synch again he wasn't getting enough blood to his gut and kidneys. He would cry because his stomach hurt so much. He would sit with his teacher or the nurse at school because his tummy hurt him. And that was completely avoidable. All that damage ....
And immediately after his doctor in Boston turned all the leads back on Macsen said "I feel better." and he's dancing again, and singing. He's doing that thing kids do when they make up voices for their toys and enact stories - all by themselves. He's not having stomach pains.His labs are all better! His BNP went from 3200 to 2800 in 2 weeks. His BUN is in range again after being very high 2 weeks ago. I don't know if it will be enough to keep from having to go the transplant route but I'm so happy to see him not miserable.He is not a meek little mouse when he doesn't feel well - he is a lion.
So - we are in the market for a whole new local team. I hate it - there is so much history and information lost when you change teams. Macsen has years and years of records - of labs and tests and surgical notes. It takes forever just to get all the centers to send them not to mention how long it takes to read them and or enter them into a new system. And all the phone calls and emails, the questions asked and answered that I've already explained many times to many other doctors. All the " Mac reacts to this, and that. and he had a terrible episode when this happened. And he got blood in his stool on this date and it turned out it was this after seeing 4 specialists." All the anecdotes. And on top of all that is TRUST. Macsen has been badly, badly burned bc I trusted the wrong doctors.
And changing to another facility capable of monitoring him means moving his local care to another state - again :( Means tacking on another hour to an already 3 hour long monthly drive.
And all that for hopefully just a few months bc I think he belongs at Boston and we need to figure out how we can do that. Looking at real estate prices in that area we have decided we can barely afford to live in a box under a bridge and that's is I sell my plasma lol. 
We have cath dates for mid May but that is too far away with no monitoring in between.
I've sent out so many emails - now just waiting for the responses to start rolling in.