Specialist Day

Today is specialist day. That’s always fun. Nothing is wrong, it’s just time. I hoped to get these done over Christmas vacation, but those are coveted appointments and I did not call soon enough.

Maggie, like many kids with special health care needs, has several specialists. Pediatrics is already a specialty, so these are sub-specialists. We have pediatric Pulmonology, urology, neurosurgery, neurology, gastroenterology opthamalogy and others as needed. I am supposed to keep current with all of these so that Maggie’s meds and supplies can flow steadily. It is difficult to do that, especially when she is healthy in a given area. I am definitely of the “if it ain’t broke don’t fix it” school of parenting.

To the extent possible, I try to coordinate a couple of visits on the same day. I can minimize visits and the accompanying hassle by doing this. Besides, we are up there so often with urgent needs, over which I have zero control, that it is nice to exercise control when I can. That’s easier said than done. UCSF is an enormous medical center and these specialists are extremely busy people. Each department has its own layer of bureaucratic hell for patients to wade through.

There has been some attempt to coordinate the pediatric specialists by utilizing a “pediatric specialties” clinic. Makes sense, or it would if all the specialties participated in this clinic. Some do, some don’t. Even the ones that do are inconsistent in their approach. Appointments can be a nightmare.For me getting appointments on one day is a convenience, but I only live a mile away, so I can get there on separate days if need be. Some families come from hundreds of miles away becasue there are so few of these specialists around. If they have to come more than once it's extremely difficult, stressful and expensive.

I called the peds specialty number in mid December and was directed to a separate number for peds Pulmonology. Ok. Pulmonology told me the first available appointment was Jan 12 (two days ago) Ok. Now I need to coordinate this with gastroenterology (GI). Sorry, we don’t’ have any control over their appointments. Sigh. OK. I call the peds specialty number again and connect with Peds GI. They cannot do the 12th because the woman Maggie needs to see only sees patients on Thursdays. Sigh. Really? I am trying to coordinate this with peds Pulmonology. Oh. I can do that for you. REALLY?!?!? Great.

Why can GI control Pulmonology, but the opposite is not true? I do not know and I do not care. Its’ set up.

She asked which appointment should go first and I chose GI. Pulmonology will take longer because Maggie has ongoing infection issues there. In addition, they always run late. GI will be the shorter of the two appointments because Maggie is stable in that area and we will just tweak meds and feeding schedules, and they are always on time.

I do have to give GI a little ribbing however. I received a letter addressed to me indicating (in a rather chiding tone)that my child was overdue for a visit and that it was important to be vigilant about my child’s medical care. According to this letter, my child “Zachary” had not been seen there since January 09. Ok.

I do not have a child named Zachary and we were there in June.

Other than that, it was perfect.

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.