I am not a doctor basher. I have been thrilled with the level of care that Ramona has received, the folks at Children’s Memorial saved her life. But yesterday I had my first really disappointing experience with a new specialist. We met with Dr. Luck, a pediatric surgeon, about doing Ramona’s G tube surgery. I kept thinking during the appointment that she should have kept her maiden name, which I can only assume was Downer. Or Tough, in which case she should have hyphenated.

She said a few things that bothered me. She said that this surgery runs a high risk of a complicated recovery. That didn’t bother me because I realize it is her job to inform me of the risks of surgery. What did bother me was her insistence on doing a barium GI study to check for “abnormalities of the stomach and intestine”. I told her that as far as I knew there were about 185 things associated with 22q, but that wasn’t one of them. Also she insisted that she would need to be cleared by the geneticist to go without food for the few hours before the surgery. I still cannot figure out what the geneticist has to do with that.

But most of all she kept referring to Ramona as “these children”. As in, “These children have a lot of problems” and “With these children if you see one problem you look for two and if you see two problems you look for 4 or 5”. I see a problem lady. A big one.

So we’re back to square one. She will likely not consent to the surgery without the GI study and I will not consent to the GI study until someone can convince me she needs it. So I’m back in line to wait for a consult with the first super-busy surgeon. Her first available is in July, I’m hoping she will see Ramona before that.

Ugh. The chinese food we got last week came with an extra fortune cookie, so I opened it for Ramona. It said, “You will make many changes before settling satisfactorily”. So, we’re making many changes. But we’re only settling if it’s “satisfactorily”.

Here’s a pic of Simon, looking as astounded as I felt during yesterday’s appointment.