Goodnight, Sweet Dreams???

June 6th Norah had a sleep study...something about that sleep study, not much sleeping occurred.

Norah's neurosurgeon requested that she have a sleep study done several months ago. He wanted to see if she is having a CNS depression that could be a result from her Chiari malformation. At this point we aren't sure Norah needs spinal decompression surgery. She does have problems that most likely are caused by her Chiari, but surgery is a big deal so figuring out when the best time to do it hard. We don't want to get to the point where she is regressing before we do it, but we also don't want to rush into it if the problems are severe. It's a big area of grey. I have learned that with hydrocephalus comes a big grey area. Example: vomiting is a symptom of shunt failure, also a symptom of over drainage, can also come along with seizures, or and the nasty bug you picked up at your play date last week. Hard to know what path to investigate first, and if you wait it out you may find yourself in a life threatening situation.

Well for those of you are curious what they hook you up to so they can monitor you while the sleep study is being perform.

• EEG watching brain activity and watching your sleep cycles.
• Cardiac monitoring watching for funky heart activity
• Leg sensors counting how frequently your legs are moving.
• Temperature sensor
• CO2 monitor
• Pulse oximetry - making sure you are taking in enough oxygen (with all this stuff on your face I'm not sure you can)
• Sensors on your face monitoring muscle movement and eye movement.
• Video monitoring

Norah didn't care for all those wires. The look in her eyes says it all, she didn't take her eyes off the sleep tech that attached it all, she lost Norah's trust.

It took Norah just over a hour to settle down. She woke up three times that first hour, twice because the technician had to come in to adjust the wires to ensure a good reading. The moment in the night where I wasn't sure if this was worth it was around 3am. Norah was awake, crying and asking for Mommy. I answered her and encourage her to go to sleep. She cried. I said everything was alright. She answered "No Mommy, it's not OK." Well that was enough to make me feel awful. Yup this was pretty much an all night torture session. She doesn't understand why this was all happening and why it needed to be done. So I spent the rest of the night in the rocking chair next to her bed and she held my hand tightly. By 4:45am she was awake and not going back to sleep, so the sleep tech started taking off all the wires and we were home by 6am snuggling in with Grant and Jason. They had made a fort in the living room to sleep in for the night.

We were supposed to be called with the results within 7-10 days. So today two full weeks later I called for the results. No one has returned my phone call yet. I guess we'll call again tomorrow.