Fire Drill

We’re home…again. Fingers crossed we’ll stay here because I’m pretty sure none of us could stand another minute in a hospital.

We were packed and ready to go yesterday when the pediatrician approached us with a look of horror on her face, this is never a good sign but when a doctor actually sits down next to you before talking you are in BIG trouble. In her hand was a copy of the final reading of Max’s CAT scan (evidently everybody and their brother had read it except for the pediatric radiologist who has the last word) with certain sections highlighted in yellow. Also not a very good sign.

It seems that Max’s abdominal aorta is dilated which can be a life threatening situation. Once I started breathing again I handed her my cell phone with the number of Max’s cardiac surgeon in Baltimore. Although she was leery of calling a doctor on a Sunday I told her that this was Max and that’s what doctors' cell phone numbers are for. When she got off the phone she remarked that Dr. Vricella had been extremely polite and expressed no concern with the numbers on the report. He told her they would do absolutely nothing for an aneurysm of the dimension reported on Max’s scan and that they would continue to monitor it every six months when we go to Hopkins. For all he knew Max’s aorta may have always measured larger than usual, without looking at previous scans he could not know one way or the other.

Because I no longer believed anything I heard from the PCH doctors and because I was clearly having a breakdown, I handed Michele my phone and told him to call the doctor himself because I wanted to hear the story from the ‘horse’s mouth’. During the conversation the surgeon did confirm to Michele that he was unimpressed with the measurements and the whole mess will be handled at Hopkins in March and May. He also confirmed that he would be doing the valve surgery right after school lets out for the summer.

This leads us to a couple of conclusions:

1. We always seem able to diagnose our son before the doctors can. We have been telling everyone to check the aorta since this whole thing started. Three hospitals and several doctors could not see what we knew by instinct, not medical training, was there. How could this scan pass through so many hands and no one detected an aortic aneurysm? Very scary.
2. As long as it is possible Max will receive all his care at Hopkins no matter which of my organs I have to sell on the black market to pay for it. Pediatric medical care in Phoenix is just too unreliable.

Another day, another fire drill!!