Is there a doctor in the house?

Raising Maggie with all her medical issues has some distinct advantages. I am an excellent diagnostician. Really. Maggie can blink the wrong way and I know instantly what is wrong and zoom her off to the hospital. 99% of the time I’m right, based on nothing more than instinct. Doctors who initially dismiss my concerns as simply those of a nervous mother inevitably say, “good job mom” when it turns out my instincts are right again. Happily I’m losing that skill a little bit because Maggie is so much healthier than she ever was before.

I can tell you this, though – that sharp instinct was not maternal, per se. It was something that kicked in only for Maggie, not necessarily for the boys. Maggie’s life and death situations honed my responses to such a fine point , that I often overlooked the bumps and scrapes of everyday childhood. None of those compared to rushing off to the hospital for a neurosurgery. I guess I was something of a specialist but couldn’t hack the general practice.


As I my boys can tell you, if they weren’t bleeding or on fire, they got zero attention from me for medical issues.


The best example of this happened in 2007. That was a rough year for us. My dad died in January of that year and then in March, Maggie became very ill and spent over three weeks in the hospital. When she came out she had the trach and her care went from complicated to ridiculous. There were numerous complications and emergency trips back to the hospital after that and things have really never been the same since.


In the last week of August of 2007 Tim had just started his senior year of high school. He complained about a stomach ache and I ignored him. He complained the next day and I said, without even looking up, “it’s probably just the start of school and the change in your schedule.”
In the middle of the night on Thursday of that week he came into my room doubled over saying in a desperate voice “You’ve got to help me.” Allright. I got up and went downstairs with him and gave him a glass of water. Maggie’s nurse was here and said, “Sally, you’ve got to take this boy into the hospital.” I said “ok” but didn’t really share her concern.


Because I spend a lot of time in Emergency rooms, I prepared myself for a long stay. I made a pot of coffee and gathered the crossword puzzle and other parts of the paper I hadn’t read. The nurse was pacing nervously and Tim was clearly uncomfortable. Steve stayed behind to deal with Maggie in the morning and finally we left for the hospital. I still felt like I was placating the nurse and Tim.

Once there, it took about five minutes to diagnose appendicitis.

Yeah. I felt pretty bad. I apologized to Tim over and over. He was on pain meds until his surgery several hours later. Once the pain was gone, he didn’t care.

It has actually become something of a family joke. Tim told Eddie not to worry if there is an emergency and he gets real sick, mom will be right there with a glass of water.


Hey, it's the least I can do.

Thankful- November 4 another beautiful day in San Francisco. I'm thankful Tim is taking the car today so I have an excuse to walke the dog in the park.

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.