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.
