I am so glad we decided to switch to a different neurosurgeon.
Here are two experiences which prove to me that we made the right decision.
Our follow-up appointment with the old neuro.
A couple of weeks ago we had an appointment with the old neuro which was made back before the whole hospital stay when we were so disgusted with the care Avery got. I decided to keep the appointment. Partly because I had a lot of questions about why certain things were never even mentioned to us, let alone explained.
I was cutting it a little close time-wise, so I hadn't had time to put on either child's shoes. And I didn't have a stroller, so when we got there I had to carry a child on each hip, as well as two pairs of shoes, Avery's braces and cane, as well as my bag and stuff, only to find a flier on the door of the neurosurgery clinic saying "We've moved!" So by the time I carried both children back outside, loaded them back into the van, figured out where the new office was, found a parking space that wasn't a hundred miles away (zero disabled parking to speak of), carried both children inside and found the right floor, we were late. Very late. And I was tired and flustered and angry. Why nobody let me know that they had moved before the day of the appointment, I don't know. The only explanation I got was "Oh yes, a lot of people have been having that problem! What a pain!" Hmm.
When we did finally get to see the doctor, the first thing he asked was, "So has everything been smooth sailing since the last MRI?" which basically meant that he'd forgotten all about the hospital stay. And then when I reminded him, and then explained that the problem all along really had been an over-draining shunt (as we'd been telling them for at least 2 or 3 days before we transferred to UVa) he said "Really?? Was that all it was??" Hmm. Yup. Then we got to my questions about why no one had ever attempted to even mention the latest MRI findings and I had to hear it from a developmental neurologist. In response he just sort of went into a brief description of each of the conditions, and basically said that these conditions are sort of difficult to diagnose conclusively from MRIs. But apparently the evidence was conclusive enough to write down in their report, just not to explain to the patient's mother. So maybe the fact that Avery has periventricular leukomalacia doesn't change anything, but it certainly helps me understand why she has spastic diplegic cerebral palsy, since it is the most common cause of the condition. And knowing that she has septo optic dysplasia helps me understand why she has some eye problems. Not only that but it makes me grateful for the fact that she doesn't have growth hormone deficiency, and so grateful for the fact that she sees as well as she does. I just don't think it's a doctor's place to decide which information a parent may or may not want to know.
This leads me to the confirmation I received this morning that we made the right decision switching neuros.
Appointment with Ophthalmologist.
This morning Avery had a routine appointment with her ophthalmologist. Everything went as normal, with the report of how we've been doing with the patching (not well by the way - I don't think she's worn an eye patch for about 2 weeks, and for the couple of months before that it was patchy at best! (Haha! Patchy!)), the testing of how well she could see the shapes on the screen, testing how well she's using her left eye (the weak one)...you know, same old same old. Then I just happened to mention the phrase "septo-optic dysplasia" when I was talking about how we'd switched to a new neurosurgeon after Avery was in the hospital (we happened to see him out in the hallway at the hospital here the night before we transferred). Apparently this changes a lot. Not necessarily in how we're treating Avery, but in her long-term prognosis. He was asking about her pituitary gland and her septum pellucidum and corpus callosum, and was explaining that there are things which may or may not be helped by all this patching we're doing, and that the surgery she will most likely be getting in the next few months will still help with the turning in of her left eye, but he's not so sure now that it will help with the vision problem itself. The patching and the glasses (which I got a new prescription for, which I will not lose this time!) might help, or they might not, but they're not going to do any harm. Either way, the vision impairment is not that bad. Obviously. Probably the biggest thing is that she may not have any depth perception, even after surgery, if she has it. But this is a girl who can spot things (school buses, Lowes, Sams Club, the hospital, the gym, birds...) before I do whenever we're driving around town. In retrospect I do notice that Brogan starting focussing really well on things earlier than Avery. When Avery was around his age I remember trying to point out things like squirrels on the lawn when we looked out of windows, and she had the hardest time seeing what I was pointing at, but Brogan spots them all by himself. Just another one of those things that I didn't realise was different until I had Brogan.
Anyway. Basically, Dr Facciani couldn't believe that the neurosurgeon neglected to inform me of any of that stuff, and he's requested a copy of the MRI, and sent a fax to our family doctor asking him to refer us to an endocrinologist. The developmental neurologist wanted us to see an endocrinologist too, but the neurosurgeon thought it was a silly idea. We'll be seeing one.
Watch this space for Avery's glasses!