Tuesday, March 24, 2009

SOS: Save our Sleep!

Pardon the terrible quality of these pics, I took them with my cellphone. Doesn't it look like she's about to jump out of an airplane? In this bottom picture, what does she have to keep her comfort? None other than her good ol' med. syringe.

I have coined a new phrase, PTSSD: Post-Traumatic-Sleep-Study-Disorder. Symptoms include blurred vision, lethargy, bags around the eyes, and that 5am migraine I am all too familiar with. Children who undergo PTSSD experience sticky heads, ripped out chunks of hair, and scratches all over their bodies where they fervently grabbed at the various leads throughout the night.

Drama aside, it all could have been a lot worse. It was a typical night for Faith, which these days means a plethora of things.

The sleep study was further complicated by an EEG to rule out the possibility of seizures (one of the many theories of why Faith is waking up so frequently). This meant even more leads covering her cranium. It took three adults to hold her down while the technician went about the monotonous task of placing electrodes on the screaming, kicking, toddler. While we were holding her down we noticed something remarkable; She wasn't turning blue! As little as a few months ago, if she were to get upset, her bronchial tubes would "shut down" and she would become cyanotic. The fact that she was having a fit and retaining her color was very encouraging!

Back to the sleep study....tired from the fight, Faith did actually "sleep" for the first few hours. Our definition of sleep is pretty skewed, for Faith never really falls into a deep sleep. She constantly twitches and breathes very shallow, frequently alarming the ventilator.

Right on time she awoke for her middle of the night rendezvous, to which the nurse came in and asked, "is she like this every night?"

To which I replied, "Y'up."

Her response, "Then when do YOU get your sleep?"

To this I could only say, "good question."

All in all it could have been a lot worse. It was what it was. Fortunately we are on spring break and I got to crawl into my bed and hibernate for a few hours this morning. When I emerged from my den, Papa Bear was bearing treats that could rouse the sleepiest of mammals; Lamar's donuts. Somewhere out there there has to be proven research that the only way to recover from one's PTSSD is by digesting lard-fried, chocolate covered dough, topped off with a fresh cup of coffee. Mmm'mmm good.

On an ending note I want to add how impressed I am with THE SLEEP TEAM (yes, I must now refer to them in all caps) at Children's (and no sarcasm here, I mean that wholeheartedly). This morning I got a call from the nurse practitioner who saw us on Friday. Like a carrot dangling in front of a rabbit's hole, our little white miracle pill was snatched away. As it turns out, the pill they prescribed is not well suited for children with breathing problems (they told us this on Friday and said wait to fill it, and thankfully we did). She said she saw the sleep study and wants us to see one of the sleep docs whose expertise is with pulmonary kiddos with sleeping probs. She didn't go into any specifics regarding the study (it takes a few days for the team to review it) but the fact that after glancing at it she wants us to meet with another specialist means that the objective of the sleep study was met.

I have to say that ever since our squeaky wheels started getting greased, the team at Children's has been extremely prompt and accommodating, and for that we are forever grateful.

I promise there are days ahead where every post I write is not going to be about sleep. Since it's pretty much ruling our lives right now so that's all I have to write about.

Thanks for all of the warm, fuzzy sleepy thoughts! We are encouraged and remain positive that happier, healthier days AND nights of sleep are on the horizon!

Jen & Brian


Michelle said...

I hope you get some help and good results from the team. I pray there is sleep on the horizon as well. And yes, she does look like she's ready to sky dive!

Hope said...

Thank God for THE SLEEP TEAM!! I am so happy you're finally getting help with that! I have to admit I'm so curious how Faith's bronch is gonna go! Yay for not turning blue when screaming! I seriously thought I was going crazy when Ava started doing this. I'm glad I'm not alone on that.=)

Marissa said...

So glad you survived and Brian found the cure to PTSSD - donuts and coffee - what could be better? Oh yeah, sleep, right?? Ha! Hopefully you will get that magic pill soon. I see sleep on the horizon very soon my friends!!

P.S. Jen, I just read the part of the book with the "not clear" cups and bendy straws, so now I get the thing with the punch at your party! We had so much fun the other night, you did such a great job! Michelle is having a showing with her friends soon and your party gave her lots of great ideas! Thanks again for having us at the last minute!