At Anna’s last visit with the endocrinologist, I was surprised to learn that her TSH levels were now normal. She had been being treated for hypothyroidism for the last several months with Levothyroxine and her TSH level went from 12 to 1.4 (normal levels are between 1-3). However, her symptoms are still present… specifically, she is still sleeping about 11-12 hours at night and napping a couple of days during the week as well. Plus her weight continues to be a struggle, she is tired and lethargic, she has no energy, and she is having trouble focusing and hearing. So if her TSH levels are normal, why is she so fatigued? The endo recommended a sleep study to see if she is having sleep apnea or other sleep disorder and I asked for an EEG also. It’s been several years since her last EEG and since I’m not sleeping with her anymore (not since my knee surgery), I would not know if she were having seizure activity in the middle of the night.
Initially, Anna’s neuro scheduled a 24-hour VEEG (video EEG) in the epilepsy unit at the children’s hospital and was trying to get the sleep study added on to that procedure. But we had to switch it around and do the sleep study in the sleep lab and add the EEG there. The good news is that our stay went from 24 hours to 12 hours. We checked in last night.
Anna decided to bring Audrey for comfort and support. Audrey was nervous so she brought her paci and bankie.
Still happy. She doesn’t really understand what is involved in this process. Anna did have a sleep study when she was 4 but that was a long time ago. (BTW, the light was terrible. I had to go to 2400 on my ISO so that’s why I converted to black and white on these. I used My4Hen’s Stunning with tweaks from the Matchstick collection.)
Uh-oh, dirty diaper! Thankfully, Anna brought a clean one. 🙂 And check out that remote, it’s huge!
The process begins. Dorothy was our sleep tech and she was very kind and patient. I brought my laptop and we watched some Walk on the Wild Side BBC clips to distract her.
First came the leg, chest, and face electrodes secured with tape.
Then Dorothy started the mapping for the 24 EEG electrodes using a paper tape measure and a grease pencil. This process took a long time.
Dorothy explained that these electrodes would be first secured with a bit of tape, but would then need to be glued down and she would have to use the air compressor to dry the glue. Anna freaked out about the air compressor and when the tech first turned it on, Anna actually cried out and leapt out of the chair. To help her cope, I gave her my headphones and we put Lady Gaga on from iTunes. In the photo, she hadn’t even started on the glue yet, but was working behind Anna’s ear which is a sensitive area for her.
Anna was very scared during this process so I put my camera down and was fully present for her once the gluing began. I leaned over the little table and told her she was brave and was doing beautifully. She would not let go of those headphones though! Eventually she had to put her glasses down too which left her completely unable to see, so I made sure to have skin contact with her at all times. Just the EEG electrodes and gluing process took over 2 hours.
Once the head was finished, then Dorothy wrapped gauze around her to keep the leads secure. Anna wanted to see what she looked like, so I took a photo and showed it to her in camera.
Finally it was time to lie down. Anna was so tired! Her normal bedtime this time of year is around 7:45 and it was after 11 p.m.! Dorothy still had to put on the pulse-ox and the nasal and mouth receptors.
It was so sweet to see Anna cuddling Audrey and finally relaxed after that long, long process that I took several photos of her with her sweet baby doll. I just wanted to climb in bed with her and rub her back but there wasn’t enough room.
I focused on Audrey in this shot while Dorothy explained how she’d be watching and listening to Anna during the night.
These last two shots are showing just how many wires a sleep study and EEG require. It’s a lot!
Anna woke several times in the middle of the night and I would get up from my very tiny recliner chair to sit on the edge of the bed with her. At 4:30 a.m., her pullup leaked so we had to turn on the lights, take off the leg wires, change her, slip a new sheet under her, rewire her and convince her it was not time to get up. 45 minutes later, she finally gave up and went back to sleep. We were woken by Mike a little after 8 this morning feeling quite bleary-eyed. It took me an hour and a half of sitting in the tub with her to get the glue out of her hair once we were home (baby oil and a fine tooth comb does the trick). I’m not sure when we’ll have the results and I’m expecting that they will be normal. Somehow I feel like it’s something chemical that is causing her extreme fatigue but we’ll see. Since it’s been over two years since I’ve witnessed a seizure, I’m really not expecting the EEG to show anything abnormal. I’m so proud of her, she really did handle this so very well. No hitting or meltdowns and we were able to talk her through most of the scary stuff. Way to go, Booski!