Cameron's Sleep Study and ENT Visit

Warning: This is long and full of grammatical mistakes because I am half asleep after last night's ordeal. 


I had planned on posting about our transitioning into PECS for communication but that post will have to wait a day. Instead I'm writing about the chaotic past 24 hours.

Cameron sleeps too much. It's not at all uncommon for him to sleep 17 hours a day. The average 2 year old sleeps 10-13 hours a day. The average newborn sleeps 16-20 hours. Recently I began trying to keep him awake in the morning so that he would not take a morning nap. He manages to keep his eyes open, but he has become increasingly irritable. Since I cut out those naps, he has become more fussy and picky at meal times and is having more moments of being spaced out. I don't know if those behaviors are related to the loss of the 2-3 hour morning nap. His excessive sleepiness has been a concern for sometime so at his 2 year visit, the pediatrician decided it was time to go ahead and send him on for further testing.

Yesterday we saw an ENT to see if there were any swelling of his adenoids. The Dr we saw was very gentle, understanding, and patient with Cameron. He examined his tonsils and said they were so small that he could barely see them. He then scoped Cameron's nose so he could get a close look at his adenoids. Cameron screamed the whole time the scope was in but honestly, I would have been miserable too. He is definitely braver than I am! After a good look, the ENT said that he did indeed have enlarged adenoids that could be contributing to his sleep issues. Even though he sleeps a lot, he could be waking up so much from not getting good breaths that it's causing him to not get restful sleep. He also told us that the benefits of taking out his adenoids outweighs the risks. The Dr. did admit that he did not feel confident doing surgery on him without a better knowledge of what is going on in that little brain of his. There is a possibility, given Cameron's developmental history, that there is more to his sleep issues than just his adenoids being swollen. Is it apnea, hypotonia of the throat, seizures, or something else? The ENT does not want to remove adenoids and possibly mask one of these more very serious issues. Did I mention I really like this guy and how careful and thorough he is?! He told us that Cameron would first require a sleep study then a visit with a neurologist. He then stepped out of the room and told his nurse to call the pulmonologist who specializes in sleep studies. Next thing I know she pops back in the room to tell me that the study had been scheduled for 7:30...tonight. I was thinking it would be weeks, not hours.

A little 8, we finally get settled in our hospital room and the sleep techs come in and start hooking Cameron up for a Polysomnography (fancy word for sleep test). Over 25 wires and a nasal cannula later, he's looking like he's ready for some weird alien experiment. Then they wrap his head and all of the wires trailing from his body in gauze. Now he looks like an alien baby. His scared little face kept staring at me from beyond all the gauze. I'm pretty sure I sensed him saying "mommy, help me". Initially he did tug at some of the wires, and belts on his abdomen. He hated the lighted pulse meter on his toe but even worse was the nasal cannula. He could not figure out how to get his paci to stay in his mouth which made it hard for him to get soothed. The poor kids is already traumatized enough from having his nose scoped earlier in the day and now here he sits covered in wires, goop, gauze, lights, and belts and expected to go to sleep without his beloved paci. I held him as tight as I could while he screamed until he finally gave up and fell asleep. I laid him down in the big metal institutional crib and watched as he slept soundly. About two hours later he woke up screaming like he was in pain. Every time I pulled him out of bed it would not count as part of the study but what else was I supposed to do? I had to hold him and help him get back to sleep without being anymore afraid than he already was. For several hours I would get him to sleep then lay him down only to have him immediately wake up screaming. During all of his fighting, he ended up needed several wire adjustments including a new nasal cannula and whatever that lighted pulse reader was on his foot. Around 3 am, the techs decided to make an exception and allow him to lay with me as long as my breathing was not being picked up on his monitors. I gladly placed him in the bed with me and sang him songs and massaged his eyes and hands until he finally drifted off.

Since there was nothing to do all night but watch him sleep, I did notice a few things that seemed off. He does gasp and snore in his sleep, which I had witnessed on past occasions. None of his episodes were bad enough to require extra oxygen which is very good thing! Something did occur though that was very odd and a bit worrisome. Several times when he would be in deep sleep he would suddenly open his eyes and start mumbling songs, numbers, and some words we had worked on earlier in the day. His brain waves showed that he was awake but his eyes were glazed over and he did not move. He did not even blink. I kept putting my fingers up to eyes trying to get him to blink and he wouldn't. Luckily, the techs caught all of the moments on camera and told me how odd it was. During those episodes, he usually closed his eyes back after 5 or 10 minutes and went back to a deep sleep. Other times he would suddenly seem to snap into reality and sit up then start crying. I have no idea what those episodes were. I hope they are addressed when we meet to review the study.

If you read all of this, thank you. I know it's long!