Sleep and Not

Gillian has always been a snorer. Like, a slumbering bear kind of snorer. Which is pretty weird because she is so tiny. We figure she got it from her Grandaddy who is also a slumbering bear kind of sleeper. Not long after the girls moved into a room together, Gillian started waking up a lot. And this woke Addie up several times a night which equalled one completely exhausted mama (esp on work nights). So, we decided to let her fall asleep in our bed and move her. That worked for about 2 weeks, and then it started to wake Addie when we would move Gillian, which woke Gillian, which still=disaster and everyone awake. So, now Gillian sleeps with me in my bed, and Sean sleeps in Gillian's beautiful single bed (compliments of Nonni and Grandaddy) amid the fairies and flowers (he's secure enough to be ok with that!).

This arrangement has been going on for about 7 weeks now. And since it has been going on, I have had the opportunity to observe the way Gillian sleeps, and it has been enlightening. She is a fitful sleeper, she snores and mouth-breathes, and I can hear her stop and start breathing again. She literally sounds like she's trying to suck enough air to breathe through a straw, and the labored breathing stresses me out and has me in worry mode. In addition to that, she hasn't gained an ounce in a year, and we're stuck at 30 pounds soaking wet. She has been laying her head down at the dinner table because she's "so tired" and has had many meltdowns of late-all indications that she's not getting enough sleep. Recently, she started complaining of leg pain, which could also be associated with poor circulation. All of these things are classic signs of obstructive sleep apnea.

At her 4 year well child visit, the doctor noticed that Gillian had enlarged tonsils, but said if it wasn't bothering her to sleep we should just keep an eye on her. At the time, I hadn't put it together that she just wasn't sleeping well. I thought she was just waking up a lot and being a pain about it. Now I feel terrible because I didn't recognize that it was something potentially more serious. I took her to an ENT to have them assess her last Tuesday with the express aim to get a recommendation for a sleep study. The doctor put "special spray" in her nose (numbing) and stuck a camera down her nose to look at her adenoids. They were also enlarged. He said the tonsils were, on a scale from 1 to 4 (4 being so big they touch-who knew some people have tonsils so big they touch?), hers are a 3. Add big tonsils to big adenoids and it's no wonder she can't breathe well at night and snores. So, he ordered the sleep study. Remarkably, this was painless to schedule and is covered by insurance. I scheduled it for the Saturday following the ENT visit.

We were told to show up at 6:30 pm to get prepped. I talked up the whole thing to Gillian, about how we were going to have a date and stay someplace, just us. And that were going to try to see if we could figure out how to help her sleep better by putting little stickers all over her and seeing how she slept. We arrived, and out tech Chris was there to meet us. Pediatric patients show up a few hours before adults, and he said in a typical night there are usually 4 people there. The sleep diagnostic center was in the Resurrection Hospital complex, and the rooms resembled hotel rooms (except the surveillance camera pointed at the bed). It was warm and cheerful and had cute bugs and butterflies on the walls.

In the photo above, you can see the surveillance camera above the TV. There was a pretty sweet flat screen for Little Mermaid viewing, which made attaching her to all 27 wires muich easier. Seeing all the wires kind of brough me back to the NICU four years before, and it was really uncomfortable for me to see her like that...like some kind of parental PTSD. Luckily, she didn't seem to mind. Because she was spacing out watching Ariel and Melody (Ariel's daughter-Little Mermaid II is her favorite).

Chris hooking G up.

When all was done, we had 27 wires hooked up to this box, which we had to carry with us when she needed to pee at night. We told her the probes on her head (each a different color) would help her dream about extra colorful rainbows. In pediatric patients, there are 20 probes on their heads (apparently mini-seizures are common during sleep with children, and extra probes are needed to test for that). So, she had two probes on each leg. She had a belt around her abdomen and one around her chest (to monitor the synchronicity of chest vs. abdominal breathing, which can apparently be out of synch), she had a probe on her throat to measure snoring, a nasal cannula in her nose to measure nose breathing, and one sticking out from the nasal probe over her mouth the measure mouth breathing. They put the rest on her face (three on the chin) near her temples, and all over her head, which were attached with goopy water soluble paste and tape. The last one was an oxygen laser probe on her finger (to measure oxygen content in her blood). She was a sight, for sure. We brought stickers so that Gillian could "put some probes" on me so we could match. And she put some on Eloise (a bear Chris gave her when we first arrive, wearing-what else?-a pink shirt) and her baby Ariel doll.

Chris, the tech, said the sleep study can diagnose up to 600 different sleep disorders. He also said he played base in a speed metal band. I like him a lot. I like that he started by giving G a little bear with a pink shirt that Gillian named Eloise. I was thinking that his job would be great for a night owl. He said sleep studies are hard in kids (obviously-I would have a hard time sleeping with all those wires), but that the parent makes or breaks it. I wouldn't wish doing that on a child Addie's age on anyone. She would be ripping the probes out every other second.

I "slept" on the bed next to Gillian, and think she got about 7 hours of sleep, and I got about 4 or 5. Not ideal by any stretch.

Anyway, aside from a pause in the study after Chris had to wake Gillian to fix some equipment that had stopped reading (after this interruption, she was wired and had a hard time going back to sleep-FOR THREE HOURS), Gillian was an absolute rockstar. She totally earned that cheap, overpriced Ariel dress she had fixated on since seeing it at Target a few days before. He had to wake us up at 7:30, and then I got to try to wash the goop out of Gillian's hair (if any of you know Gillian, you know that she HATES washing her hair and getting water in her face and eyes, so washing it three times and scrubbing her scalp clean was like the third ring of hell for me). When she was all clean and clothed, we went out and got to look at the computer screen with all the readouts of her brain waves, and breathing, and snoring. They match up those patterns with the video surveillance to identify sleep stages and determine what is going on vs. what should be going on. It's very thorough, and as a scientist, I thought it was fascinating. Research indicates that kids who are diagnosed and subsequently have enlarged tonsils and adenoids removed have a marked improvement in sleep quality which leads to significantly improved behavior (sometimes reversing ADHD symptoms) and better daytime attentiveness, appetite, and general wellbeing.

We left the sleep center, went to Dunkin Donuts for some Munchkins (a G favorite), and then to Target to get her dress. She has worn it for three days. That and the wig...oh, WHY did I buy the wig (she has worn it daily and everywhere for going on two weeks)?

The test results will be available in 7-10 business days. Hopefully by next Wednesday. I am crossing my fingers that we get some answers, and that we can have her treated to help her get that vital sleep that affects every other aspect of her quality of life... as for me getting in the saddle with this whole thing-better late than never.