Well, it finally happened. The sleep study that we have been waiting for since March finally took place. I have mixed emotions about the entire experience. I'm glad we did it, but I'm not sure we're going to get the results we were looking for. His "sleep" was not typical during this test, and we were working against many outside factors.
7:00pm- We arrived at the outpatient entrance of Memorial Regional to be admitted into the Joe DiMaggio wing for the study to take place. We were instructed not to allow Connor to nap that day, and he was exhibiting signs of being very tired.
7:45pm- We are picked up from the waiting room by our nurse (who happens to be named Casey) and escorted up to our room for the evening. A single room with a bed for Connor, a rolling chair, and a more substantial chair that can be laid flat for a person to sleep in. The nurse then had me fill out a bunch of paper work and started to detail exactly what would take place during the sleep study. She was a little difficult to understand but for the most part I think we both felt clear about what was going to happen.
8:15pm-9:15pm- We set Connor up with his Kindle and it took about an hour to put all of the leads on his head and body. He was a gem! The nurse couldn't get over how well behaved he was. She told us it was usually very difficult for someone his age. He was great! He was perfectly content to watch Little Einsteins or Mickey Mouse Clubhouse, and watch what the lady was doing. There was actually a moment where his little eyes were closing as she was putting the "stickers" on his head. He was so tired. We had prepped him before going that he was going to sleep at a hotel and that they were going to put stickers on his head, so he wasn't worried or nervous about any of it.
9:15pm-10:15pm- MELTDOWN! The last two steps are the nose tubes (2 separate wires/tubes meant to rest at his nostrils) and the head sock. He immediately didn't like the nose tubes because they prevented him to be able to use his paci, which he uses to sleep (not to worry, my doctor said it's ok for him to sleep with it, don't judge) and of course they were uncomfortable. Then when she tried to put the sock on his head she used one too small, and he immediately responded with pain. The poor little boy. Of course he didn't want to even try the next one. He cried and cried, and another nurse even came and closed our door because I guess we were disturbing other patients. I sang songs, and read books, and he just wasn't happy. He got extremely congested (duh) because of his crying, and it made the nose tubes even more useless. The nurse came in to switch his nose tubes because they had gotten moisture in them from his crying. I asked her to wait until he was asleep and then we could attach the new set. Eventually he calmed and fell asleep. At that point Daddy left and went home. The study asks for only one parent to be present since the room is so small. Since Connor was asleep I thought I might read a book, but nope, the lights in the room were completely shut off, and the only I had left was my cell phone. I never went to sleep. I didn't want to.
11:00pm-11:30pm Connor wakes up screaming pulls out nose plug and is so upset. I didn't care about the nose plug, and I happily gave him his paci to calm him down and help him rest. It took 30 min to get him to stop crying and go back to sleep. Once asleep the nurse comes in and repositions the nose tubes and attaches them back to his face.
12:15am- Connor crying in his sleep
12:30am- The nurse comes in with arm splints to attach at his elbows so he cannot bend his arms and grab at his face. I knew it would be bad when he woke up and realized what had happened.
12:38am- Cononr crying and stirring in his sleep.
12:51am- At this point the nurse was coming in every 15 minutes to readjust his nose tubes and add more tape. This of course caused him to stir, feel uncomfortable, and I was at his side readjusting him.
2:03am- After many readjustments to the nose tubes I was asked not to give him his paci unless he was very upset. Like I said before she was coming in frequently to readjust the nose tubes and even turn on and off the machine that was providing the oxygen.
2:34am- Nurse woke Connor causing him to sit up crying because of adjusting nose tubes. It took quite a few minutes to calm him back down and yes, I used the paci.
2:45am- Again, nurse coming in, adding more tape to the nose tubes woke Connor causing him to sit up crying. She had come in earlier for an adjustment and noticed the paci and took it out of his mouth. Thankfully this time I was able to settle him without the paci.
4:03am- Woke up crying, attempting to grab at nose tubes, saying "noooooooo". Was very upset he couldn't take out tubes, and it took a little while to calm him back down.
5:00am- Tim comes back to the hospital and it is time to wake up Connor. The night is over.
It was certainly a process to take off all of the tape, and Connor kept saying "ouch" and "you're hurting me". By the end of the night, he had so much tape on his face it was painful to even look at. It breaks my heart even now looking at it knowing he was so uncomfortable. The waxy paste that connected the leads to his head made his hair a goopey mess. They offered to clean it there, but I didn't care, I just wanted to get him home and comfortable. There were bright red marks left on his cheeks from the tape that lasted even until today. He has my sensitive skin, that's for sure. You could see how the skin was being stretched and pulled under the tape, and there were even white marks left showing where the tubes sat against his skin. I hate those tubes and that tape. Hate.
We got home and by 6:00am we had all crashed in bed. Connor slept comfortably until 9:00am and I got until 11:30am. I was pretty alert the entire night, especially because I was constantly consoling Connor and taking notes. I didn't want to ever be in a fog if Connor needed me. I downloaded apps, and brushed up on Social Media. It was nice to get encouragement from loved ones throughout the night who happened to be awake at various times. That was wonderful.
After we were all part of the land of the living, we took Connor to Chuck-E-Cheese to celebrate how brave he was. He went through a lot, and it was traumatizing for all of us. I can't believe what a trooper he was, but he was ready to go home when it was over, and I'm thankful we provide that loving home for him to rest in. I'm so blessed by him. We won't find out any answers (if there are any based on such a crazy night) for another 3 weeks. We will go back into our routine of Daddy and I taking turns each night when he wakes up and count each day as a blessing. We're raising such a brave little man and I couldn't be more proud.
