Pain as an understatement. DD's sleep study #2.

It's been a horrid night. I had a Chiari headache this morning but thought I'd be able to get it under control. Nicole came over so we could go across the street for our neighbor's Pampered Chef party at 1. I took a few meds and they kicked in quickly. Within about 90 minutes it had rebounded pretty badly.

I went home and reclined for about 30 minutes. I got up suddenly and crawled into bed. I didn't realize I never said anything to my husband, kids, or J until DH came in to see what happened. Next thing I knew, a few hours had gone by. I came out to the recliner again being beaten with a sledgehammer, needing to focus on my speech to get my words out right. I hit OxyContin and after an hour there was still no effect so I added Zanaflex. I can feel a little bit of warmth and tingling from the combination right now, a slight bit of relief but good grief. Getting hit with a sledgehammer would be a good distraction about now.

Distractions. That's what I've been trying to do. Distract myself.

My 5 year old's second sleep study to determine how to get her oxygen levels under control is set for the night of October 3rd. I'm so glad we're finally getting close for some relief for her after all these years. We also had her 504 plan worked on at school with the teacher, behavior specialist, and school principal. It went really well and hopefully she'll have a much better second quarter now that the first one is wrapping up.

Here's to the hope that Sunday will be a much brighter day than today.

Change of plans

I did the chest CT with the iodine and had to the hold the arms-over-the-head position afterward until Dr S came out to talk to me. I quickly had no feeling in them so was relieved when he came in and gave me permission to move. He's the vascular interventional radiologist that the cardiothoracic surgeon from Monday wanted involved. Dr S was not comfortable continuing on with the next component, the angiogram. He had been watching the CT and said there was definitely arterial compression but wasn't sure yet there wasn't something else going on. He asked me what the cardio doc did on Monday and I showed him, also mentioning briefly about the CM/EDS/etc so he tried the test himself and when my pulse disappeared he agreed the angiogram does for sure need done. However he hadn't been aware of the Ehlers-Danlos Syndrome so he still wasn't comfortable continuing with the angio right then, not until he had a talk with the cardiothoracic surgeon about what was going on and getting my full history so it can be done safely. He also wants to talk to him about the possibility of a venogram.

So, for now, the vascular doc and the cardio surgeon need to have a chat and they'll call me and schedule the angio and possibly a venogram.

I came home yesterday and my ICP started feeling messed from up the length of time on the table. With the second decompression the craniectomy was expanded to a pretty hefty size and every since then, anything touching it at all bugs the heck out of my ICP--laying on a pillow, table, comb, whatever. They took quite a few series of scans with my arms in different positions, each time the IV auto-injector releasing more iodine (love the "Did I just pee my pants?" feeling, ugh, but I understand gadolinium just doesn't cut it in imaging like this). I slept a bit and felt worse when I got up, was out of sorts the rest of the night. Feel a touch better today, intracranial-pressure wise. Good thing. I have a committee meeting via phone in about 40 meeting for a CM/SM group.

We have parent conferences for both kids this afternoon. Yesterday before going to the hospital, we had DD's meeting with the teacher, behavioral specialist, and principal to work on her 504 accommodation plan. Hopefully this will help her be more successful in school. Fingers crossed.

I will post when I know more on the testing schedule, and if they tell me any more on yesterday.