Waiting...

Okay, here's an update on Madeline's latest medical stuff. Back in September I took her to a pediatric GI doctor to see if there's a reason for why she throws up so much and still eats such small amounts of food. The doctor did not have any answers. But he did order some diagnostic tests.

First was the modified barium swallow. Maddy did fine. The speech therapist who was there did give me some tips on feeding her to reduce the vomiting. Since then, her eating has slowly gotten better but still isn't great. Anyway, the speech therapist and radiologist could find nothing obviously wrong with her digestive system that would cause her the problems she's been having.

The second test was a CT scan of her head. The GI doc ordered it because vomiting can be a symptom of things going on with the brain or spinal cord, and achon kids are more prone to have those problems. My big fear with the CT was that they might have to sedate Maddy to get her to hold still. But she was an angel and they just had to strap her down. That's why I knew something was up when the CT tech needed more pictures, even though Maddy hadn't moved at all during the scan. Turns out the radiologist saw evidence of spinal cord compression. He saw that the foramen magnum (the opening at the base of the skull) was a little too narrow, but since a certain amount of narrowing is expected with achon kids, they couldn't tell if it was a problem. The GI doc called me to tell me all of this a day or two after the scan. He didn't want to freak me out, but we needed to see a neurosurgeon.

So even though we already had a scheduled appointment with a neurosurgeon in December, we got bumped up to the end of October. (When neurosurgery makes time in their packed schedule for you, you know it's kinda serious.) We headed to Cincinnati Children's. I was a little concerned when the intake nurse seemed to have no knowledge of what achondroplasia is. He was asking all these questions about her development, and I could not seem to get through to him that there is a totally different developmental growth chart for kids like her. But then we met Dr. M who does have experience with achondroplastic patients. He got to the point pretty quickly: he looked at the CT scan, and Maddy has cervical stenosis and spinal cord compression that warrants surgery. He emphasized that it's not an emergency, but that we don't want to wait many months. He said there's a 99% chance that he'll want to operate by the end of the year. But first he wants her to have an MRI to confirm that that's the right course of action. He also wants a sleep study to see if she has any central or obstructive sleep apnea. After he gets the results, they will find a spot for Maddy on the surgery schedule.

Getting these tests done has been slow and frustrating. She was supposed to have the MRI last week but came down with a cold. She has to have anesthesia during the MRI and they can't intubate her if she's congested, so we rescheduled for next week. Part of me was disappointed that we didn't just get the MRI over with last week. I've been so anxious about it, and I just wanted to get it over with.

Then there's the sleep study. I finally took her to the initial appointment at the sleep study clinic today. A nurse practitioner examined Maddy and took a look at the results of her sleep study done in Germany when she was only 2 months old. The NP said that she thought the sleep apnea had been more serious than the report indicated and that we definitely should do another sleep study. But of course they have a full schedule and they're trying to find a time to squeeze us in next week. Then it'll be another 2 weeks before they get the pulmonologist's report. At one point the neurosurgery department thought they might be able to get Maddy into the O.R. at the end of November, but I don't see that happening without these tests getting done quickly.

So there you have it. Now we wait - wait for tests, wait for results, wait for surgery. The word "neurosurgery" nauseates me. But like Maddy's pediatrician told us last week, this kind of surgery is easy compared with other procedures that neurosurgeons perform. It should only (haha, only) take about four hours, with a three- to five-day recovery time. It's still scary stuff. Finding other parents online who have already gone through this with their kids is helping a bit. This is a whole new world that I'm just not prepared for.