It's been one of those days where I am in and out going to various doctor's appointments. I have them more often than I like and have another day like it coming up on Monday. (Yes, that would be the Monday right before we leave on a major road trip.) And why did I schedule so many doctor's appointments right before we leave? It's a good question. I didn't mean to.
On this very steep learning curve of being a parent of a child undergoing tissue expansion, I learned something new today. If your child has a mild cold (slight cough, runny nose), do not bother to drive a half hour north to the doctor's office for the next round of expander inflation. This is because they won't do it. Now, I have to say I'm happy that my daughter's doctor is conservative and is very careful about infection. Evidently because of the huge foreign objects implanted under the skin, it can be very easy for them to become infected, even from something as benign as a mild cold. Thus, antibiotics are prescribed, not because they will do anything for the cold, it won't, but because it helps to ward off unwanted infection of the expanders. We will go back on Monday morning, assuming H. is better, and do the expansion then.
The morning wasn't a total bust, though. I received more training about how to fill the expanders and feel fairly confident I can do it. Plus, they sent me home with all the supplies we'll need to do expander-stuff on the road in case H. isn't well enough yet to warrant us going into the office. The most helpful thing was when the nurse showed me an expander with a port so that I could visualize what I was doing. Knowing what the ports under H.'s skin actually look like helped me understand what exactly I was doing with that needle. It still feels wrong, though, to be sticking needles in my daughter's head. Just sayin'.
This afternoon was a visit to the neurologist. We are backing down off the Kepra medication which caused the poor brain function. I may go down in the annals of epileptic parenting for how I described H.'s behavior when on high doses of the stuff, though. I told the doctor that it was like living with an 11 year old Alzheimer's patient. When I said that I thought the doctor was going to bust a gut. "Oh, I'm going to have to use that" quickly adding, "Of course I would never mention the patient's name." He then sobered a bit and said, "I can't write that in the file, I'll say 'depressed brain cognition' instead." He did continue to chuckle throughout the appointment. I like a doctor with a sense of humor. The serious part of the appointment was that once H. is weaned off the Kepra, we will try something else. It's a matter of balancing the desired affect of stopping the seizures with the side effects that each medication has. Since each person responds differently to each drug, it's really a matter of trial and error to find the correct one sometimes. We're just not going to jump to what happens if we can't find a drug which will control the seizures. Just not going to go there...