Colby's Sleep Study

This Saturday, February 5th, we did Colby's sleep study. It was an interesting adventure. The sleep study was scheduled at Primary Children's in Salt Lake. We left Saturday morning and met up with my brother, Jake, and his family and spent the afternoon hanging out. We ran a couple of errands, did some shopping, and went to my aunt's house for dinner. It was nice to be out with family for most of the day and to get a chance to relax before going in for the study.

We left my aunt's house about 7:30pm and went up to the hospital. Once we were checked in Paul helped us get settled and then headed back with my brother and Riann for the night. They would only let one parent stay over night and since I had the food I got to stay.

The technicians who got us all set up were wonderful. Kristie was the one who helped us the most and she was great at explaining everything as they got started. They were really gentle with Colby and did a great job interacting with him.

(Getting set up and checking out everything that was going on.)

When they first started Colby was very excited to see new people. When they would get close to his face he would talk to them and he watched them closely as they maneuvered around him. As the other technician, I think his name was Derek, started reaching around to put Colby's chest strap on Colby grabbed on and held his arm tight. It was really funny to watch. Colby didn't mind getting all of the wires attached to his head, until they put the mesh cap on to keep everything in place. At that point he had been touched enough and didn't want any more. It took them about another 10-20mins to get the rest of the sensors and wires hooked up before I was able to pick him up. At that point he didn't want to be cuddled, he just wanted to eat. I was grateful for that because it meant that he was tired. It was hard because you could tell he was extremely uncomfortable and with the bundles of wires we had to work around and that made it hard for both of us to get settled.

(Angry and ready to be done. Too bad it was just the beginning...)

Once we got him calm, we laid him down and prayed he'd get some sleep. He did a good job and went right down. Part of the testing process is making sure all of the sensors remain in the right spot and everything stays clear. About 30 minutes into the actual start of the test Kristie had to come in and clear his oxygen sensor by pushing a higher level of oxygen through the tubes. He did a good job staying asleep through the check up but he woke up shortly after she left. Once I got him back down he slept for about another 45 minutes before they had to make another adjustment to his chest sensor. I think it got shuffled when I picked him up to feed him. Again he slept through the whole adjustment but woke up shortly after she left. So I fed him again and got him straight back down. After the last shuffle he was able to sleep for about two hours before he was checked on again. Like the other two times he woke up a few minutes after she left. Each time I think he just wanted to cuddle because it never took him long to go back to sleep. After the last check he was able to get in another two hours worth of sleep before Kristie came in to run oxygen on him again. She said that his levels had been spiking throughout the night and she wanted to test him for the last hour, running it the whole time, so the doctors could see what he did when his levels were "normal". Unfortunately they only got about 15 minutes worth of testing in before he woke up again. This time he woke up "pulling" at his oxygen tubes, which Kristie said was probably due to the oxygen flowing into his nose. I tried to get him back to bed as quickly as possible but by the time he was asleep again it was 6:30am, time to end the test.

I think in the end, even with all of the up and down, we still got a good test in. When we first talked about his night time routine with the technicians they were a little worried because it does take Colby a little bit to get to bed and because of my late work schedule he normally goes to bed late. They said that if he didn't get right down, or wasn't sleeping good by 2am, they'd have to end the test. I'm assuming that because they didn't have to stop the test early they had enough to go on. They like to have at least six hours of sleep to work off of and according to my math we got just over five. So, I think we were okay. I wanted for them to get a reading of what might be waking him up at night, however, I don't think we got that because when he woke up he it was because he had been checked on, not natural causes, but as I listened to him sleep he did do a lot of the other things I had concerns about, like his gasping/coughing when he first goes to bed.

By the time they ended the test I think Colby was excited to be done. I think he could sense a change in his environment because he seemed to perk right up when Kristi came in the last time. Even with everything still on he was happy and content. As they got him prepped for his blood draw (to check his oxygen levels) he was happy to watch everyone again. He did great while they took all of his sensors off and got him cleaned up. He started to get restless again at the end of it all but I think that was just because he was tired.

(The end of the test, getting all cleaned up and getting the sensors taken off.)

By the time we were all packed up and back in the car, he was asleep. It was a hard drive home, my brother lives about an our north of Salt Lake and it was still dark and I was VERY tired. We made it home in good time and Colby and I went straight to bed. I had contemplated the whole way home whither or not I should wake him up to feed him before crashing but by the time we were inside and down in our room Colby hadn't even stirred. I went a head and left him in his car seat, which was pushing my luck, and crawled in bed. Thankfully someone was looking out for me because four hours later (five for Colby) we both woke up. We were as well rested as possible for the night we had both had and once we got up we got bathed and he was a happy boy.

(All done and ready for a bath!!!)

The rest of the day was pretty good. Riann got to go to church with her cousin Daniel and had a great time playing. I'm SO grateful my brother and sister-in-law were so willing to help us while we were there. Riann didn't even have to think twice about what was going on because she had gotten so much attention from everyone and it was a blessing for Paul and I to be able to focus on Colby.

It will be 2-3 weeks before we get any test results back and I'm praying that everything is okay. Overall I think we'll be alright but we're praying that Colby wont need surgery. After his last follow up with our local ENT we were told that we want to avoid surgery if at all possible so we're hoping that we get good news. We're working hard at hitting that four month mark where things should start to turn around for the better and we should start to notice improvement.

I'm so grateful for our family who fasted for Colby this month, without us asking them to, and for all of our friends who have offered prayers in his behalf. I know that part of the reason things are going well for him is because he has so many people watching over him on both sides of the vail. Colby is such a blessing to us and we are amazed by his growth each and every day. You can really tell that he's excited about life and is learning lots. He LOVES his sister and it is so much fun to watch them grow together.

Thank you all for your support and prayers as we've gone through this experience. It's been an interesting ride but we're grateful for the things we're learning every day.