I seem to remember an episode of the Simpsons where Homer was amazed at the invention of feeding tubes so he could eat without any effort. Anyone else remember that?
We went to Grace’s surgeon appointment yesterday and she immediately started talking about which tube Grace would have. My head was spinning. I was like, “so are you saying that you think Grace needs this?” She replied that Grace “clearly hasn’t gained weight in a year” which I wasn’t aware of. I guess different doctors have kinder ways of talking about weight and she was so plain about the fact. In her opinion, she doesn’t think that what Grace is experiencing (see my last post) is actually Sandifer Syndrome because she didn’t think that strange eye movements were a symptom, however I told her that I read they were and she said she’d look into it.
Although insertion of a feeding tube (a ‘peg’) is a very safe and routine procedure which needs to be redone every 18 to 24 months, there’s a more high risk surgery called a fundiplocation for children with severe reflux. This is a more risky and heavy duty surgery and it mostly happens separately after the first operation if the reflux persists. However, in some cases it’s done at the same time and she’s considering this in Grace’s case. First, we have to have a couple tests to see how severe her reflux is and if she does, indeed, have this Sandifer Syndrome I mentioned.
The first test is an overnight PH study where she goes off her meds for a few days and they measure the PH levels in her stomach. The other is a contrast study of her digestive system to see if she has any anomalies which are causing the reflux. She’d also like a prolonged EEG which will measure her brain activity for a few days to see if she has seizures, however her specialist said she hasn’t done one in 10 years and is looking for the equipment to carry this out. Grace will definitely have one but it will probably take months before that happens. At any rate, the reflux tests will be in the next 3-4 weeks and the surgery will take place shortly after. So I suppose we’re looking at another lovely Rett Syndrome Christmas.
On that note, it’s her birthday on the 24th (Thanksgiving) and I’m trying to be positive. Both her other birthdays were tainted with sadness for different reasons and I wanted this one to be different.