When a sleep study for Logan was ordered, I naively assumed SLEEP was actually involved. (Experienced parents can begin laughing here). Below is a recap of our experience, and few extra things I could have done to make it even better.
Following Logan’s psychological evaluation, the Doctor also ordered a sleep study. The first available appointment at Johns Hopkins All Children’s was coincidentally on my birthday, which meant we would wake up at the hospital on Logan’s!
To prepare Logan, we talked about how he would be hooked up to wires all over his body, and the various purposes for each one. I’ve always felt that honesty has been the best approach with the boys in regard to their health care. Sometimes the truth about what is happening can be scary, but the fact that they always know they are safe with me is what matters. JHACH also provides a video on the experience on their website under Sleep Lab.
While packing for the overnight stay, I really had no idea what to bring, even though I was provided guidance in the pre-visit paperwork. As it would turn out, you really don’t need much. Here’s what we needed, and what I would have changed slightly:
- Pajamas – I brought him shorts and short sleeves, thinking that would make it easier for the wires to be attached, but it turned out long sleeves/pants would have been a better option to keep the wires in place. (He slept in the clothes he arrived in since they were comfy pants).
- Socks – I should have packed warm socks for both of us. The sleep lab was COLD. He ended up snagging a sweet pair of hospital socks during the night to keep the monitor on his toe.
- Stuffed animal, soft blanket – because he retained so much heat with his head all wrapped up, he didn’t need the majority of his bedding (I appreciated his extra blankets)! The stuffed animal was handy to stick in his hand throughout the night when he was trying to grab at the nose tubes and face mask. I believe having his own blanket made a difference in his comfort level too.
- Snacks weren’t necessary – I guess this could depend on the appointment time, but ours was set for his bedtime. By the time he was all hooked up (he watched TV during that time) it was time for bed.
- Quiet Activity – I brought a book to read, which helped soothe him into sleep mode, and then sang some songs, but playing some music might work too. It was a lot of activity during hookup to then just switch off the light and say “bedtime”.
- Phone charger! – It turns out the parent doesn’t sleep much during this evening of fun, so Candy Crush and social media were my friends.
- School/Work – I mistakenly thought we could go to school and work the next day. No one got enough sleep for that.
Our experience in the Sleep Lab at JHACH was wonderful. Logan is so resilient. It is amazing to watch him just smile and make the best of such adverse conditions. He was instant friends with the Technologist, Nicole, and interacting with her so politely throughout the night. He kept making her laugh, because when she would come in to adjust his mask he would look so mad but then say in the sweetest voice, “Please stop doing that”.
In the morning, the staff sang “Happy Birthday” over the room’s intercom to wake Logan up – it was so sweet. Nicole told us it was their first patient birthday in her 9 years at the lab! They even had a present for him.
Now, we wait for the results. Over 1,000 pages of data was collected on this beautiful boy, and hopefully it will lead to more answers on what we can do to help him succeed.