I hate sleep studies.

Sleep studies are awful. I don't think I know a single parent who finds them remotely pleasant. They should name it the "non-sleep study".

Since the orders were for an EEG along with the routine study, the techs had to fit 21 probes on Mackenzie's head. For those of you who have never had a sleep study done before, they first dip the probe in a mixture close to the acrylic they put on your nails and place it on the scalp. They then dip a strip of gauze type material in a strong smelling adhesive and use high pressure air to dry it. It's quite terrifying for a kiddo but for kiddos that don't understand any of it, it's pure torture. Mac was screaming (yes, screaming), crying, thrashing... ugh.

But anyway...

We ran into a problem quickly after we arrived. Our GI nurse practitioner ordered the sleep study, so she had no clue about the respiratory portion of it. ((We definitely appreciate her writing the order and getting the ball rolling, though!)) The order was very unclear on what respiratory support Mac was supposed to get. The techs called the neuro who Mackenzie has been assigned to, who said she'd prefer for at least the first 2hrs to be off the vent (technically CPAP with back-up rate) but would leave the final decision up to me. I wanted them to get the most accurate data but didn't bring our mist compressor seeing as though Mackenzie typically doesn't sleep with it except for naps during the day. After trying to explain to the techs that Mackenzie canNOT sleep on her HME (the resistance is too much for her) and that it would throw off the study, they wanted me to let her sleep without any moisture source for 2hrs (in a cold, dry room). Absolutely not. I tried to explain what happens when trached kids don't get moisture (especially Mackenzie)... the pain, the plugging, etc. I think they would have understood better if I told them the earth was flat. :op Long story short(ish), they managed to get a mist set up to start off the study on. When I asked for clear parameters on when Mac will go on the vent (respirations, sats, tidal volume, effort, etc), they said "If we see anything troubling, we'll call the neuro and ask her." I told them in no uncertain terms that if I thought Mackenzie needed the vent I was putting her on myself and not waiting for a neuro - who knows zip about Mac - to make that call. Thankfully they understood where I was coming from and that I wasn't trying to be rude, just a *touch* protective.

As it turns out, Mac lasted the entire night on the trach collar and impressed me. Her respirations were a bit wonky (up into the 50s quite a bit) and her sats were all over the place, but she only had 2 desats into the mid to low 80s. Last night she took a nap at 7-ish and had some desatting and needed a liter of O2 for the duration, so she obviously was getting a bit tired, but she did terrific!

The big disappointment with the study is that Mackenzie didn't have a "nice" central episode. Typically if she has a big central episode on the vent (without a backup rate) her sats will drop to the 80s, on the trach collar her sats will drop to the high 60s or low 70s. I really wish they could have captured this like they did during the 1st study. A few months ago it was a 1-3 times a night deal, but lately it's only been every 3 nights or so. That's great progress and if we could get rid of it entirely I'd be really pushing to wean off the CPAP.

I won't find out the results until Wednesday, which is when we meet with the neuro for the first time. I'm interested to hear if they discovered anything that would explain the morning seizures. I'm also eager to talk to the pulmonologist about how well Mackenzie did without the vent and figure out a plan on how to get her off. I'm really hoping the central events are seizures. We could figure out a medicinal way of controling them and toss the vent out the window... and into the Apria van, of course. ;o)

So there we go. I have mixed feelings about everything and am extremely anxious to see how it all falls into place. I promised Mackenzie no more sleep studies for at least the rest of the year, and I'm going to do my best to keep that promise.