Those who don't know history...

You may recall Maggie had some medical tests last month. I found out yesterday – over a MONTH AFTER the tests were done – that there may be a problem. They want her to have an “uncomfortable” test to determine if she needs more abdominal surgery. Mama said no. She already had that surgery. Someone needs to read the history of the patient. Just a thought.

I feel very fortunate to live so close to UCSF (Univ of California, San Francisco), a top-notch pediatric care center. Maggie was actually born at a different hospital but they just do not have the depth of resources and specialists that Maggie needs and we switched over to UC. It is one of the best in the country if not the world and I can walk there in 20 minutes. Maggie is alive today because of that place. And sometimes in spite of it.

However, it is a huge academic hospital. That means there are many doctors shifting around. They do a few years at UCSF and then become the head of some department at another institution. Specialists have come and gone from Maggie’s life. We have stayed in one place and have had three different neurosurgeons, different general surgeons, and different neurologists. We have added specialists like Pulmonology. The GI doctor has been the same, but because we started out at a different hospital, even he and his nurse practitioner (who I adore) do not know Maggie’s complete history. They have it, of course, they just weren't part of the team when some things happened.

Apparently, in the month since this test was done, various specialists have been “presenting” Maggie at their department meetings. The test revealed an abnormality in her intestines and they have been discussing what they “need” to do about it. No one bothered to call me for over a month, but they presented her case at a pediatric surgery meeting and decided on a course of action. I am not complaining about privacy issues or anything like that, but a phone call to me may have saved a lot of time and resources. I believe the abnormality they saw is in fact the surgical repair that was done the day she was born.

The Nurse practitioner from one department called to tell me that ped surgery, a separate department, ordered this “uncomfortable” test for Maggie. She thought she was breaking bad news to me about a physical anomaly in my daughter, but of course, I already knew.

I said, simply,”I know, she was born with it and they repaired it the day she was born along with five other anomalies. I need to know 1) if they are familiar with her history, 2) what they would do if the test showed what they suspect and 3) what would happen if we did not address it. I am not putting Maggie through any painful or uncomfortable procedures unless I am CONVINCED they are absolutely necessary and that we would take the next step if needed. Moreover, they will have a hard time convincing me about its necessity when no one even called to tell me about this for a MONTH. I’m sure this is the textbook response to a test result like that, but someone needs to understand that the textbooks rarely apply to Maggie.” She agreed and will have the surgeons call me directly.

A-Yup. Good idea.

Remember my daughter is now 15 and has had over 70 major surgeries. Her insides are like a patchwork quilt. And we are not going back in there now.

“If it ain’t broke don’t fix it” does not quite apply. It is more of “it was broke, it’s already been fixed, and that’s why it looks different. Do your homework before you put a child through painful procedures. And here’s a thought. Call her parents to get input.”

That's probably too long to catch on as a saying.