Frustration & Procrastination

It's been a couple of weeks since our last round of intense medical issues started. First was the 8-day stay in the hospital for RSV, interwoven with a 48-hour video EEG*. It's somewhat common knowledge that EEGs should not be preformed during illnesses, because being sick and/or febrile can drastically lower a person's seizure threshhold, and they are not really representative. In addition, Jordan was definitely not herself during those 48 hours, and I don't believe that we caught any of the activities I was worried about. Believe me, I was confused as to why we continued on with the previously schedule EEG.

A week later we received a call from her pediatric neurologist, saying that, once again, her EEG is basically a dog's breakfast, and combined with all the movement artifacts from the horrific coughing, it was very difficult to make sense of the results. In short: she is possibly having mild seizures, and maybe we should be medicating them. He was going on vacation for 10 days, and we are going to meet when he gets back (should be sometime in the next week or so) to make a game plan for moving forward.

After much thought, and guidance from friends on an internet group for childhood seizures, I've decided to insist on a new EEG once she's healthy again. Then, to add insult to injury, during our last trip to the hospital, I found out from the attending doctor that both she & the ped neuro were against the EEG while she was sick, but she had it nonetheless -- no one knows why. Talk about frustrating! Oh well, it was annoying, but it didn't make or break the hospital stay, and was responsible for getting us moved into a single room in the School Age ward of the hospital**.

As for procrastination, I'm having a terrible time doing any research on the variant Retts Syndrome (CDKL5) that Jordan will be tested for soon (we had to reschedule the blooddraw last week -- she was in the wrong hospital). From the first few papers I've read she fits the description to a tee. But even though there are more medical articles, research studies, support groups, and even other families all available to us, I just can't seem to get motivated to connect with any of these people or information. I just cannot believe that her test will come back positive -- since all the other hundreds+ tests have come back negative. I guess I don't want to get my hopes up by being prepared for a positive result.

And yes, I do want a positive result. It took me awhile to decide that, but in fact, I think a positive result would be a huge relief -- even though it would not change her prognosis, and there are no "cures." We still wouldn't reasonably be able to predict what the future will hold for her, but at least we'll have a name and a sense of understanding. We'll also be able to find out if this is something that Devon and I are recessive carriers of, or, if, as in the vast majority of cases, it was a random genetic mutation.

Either way, it's been a long 3 weeks, and we still have a long road ahead of us over the next couple of months.

*Note: Do not mock your neurologist, or change your clothes with the bathroom door open. Not only will it be recorded for all eternity, but it's broadcast to the entire floor from the nurses station (yes, pointing out into the aisle). Hey, where's the HIPPA for mom?!?!?

**Of the 11 days we were in the hospital in the last 3 weeks, we only had to share a room for one night -- the night she was first admitted, and we didn't even get into that room until 3:00am. It certainly pays to get to know the nurses, residents, & attendings. . . .