Nolan, at 6:00am. Exhausted.Sleep depriving a two year old child (who exists in a sleep-deprived state to begin with) is a very exhausting and difficult activity. A rundown of the night before the EEG:
8:00pm: Matt goes to bed. Nolan is incredulous he gets to stay up. Nolan is giddy.
9:00pm: Nolan plays with trains and all of his brother's (usually forbidden) toys.
10:00pm: Nolan starts to get sleepy. Then hyper. Starts throwing toys around.
11:00pm: Absolute mayhem. Crying. Laughing. Small boy trying to hide so he can go to sleep.
11:30pm: Nolan falls asleep. Nothing will wake him. Not even tickling. He goes to bed.
5:00am: Nolan is woken up. He is decidedly unhappy. Cries. Throws sippy cup.
6:00am: Tries to crawl under desk to fall asleep. Tries to hide under a blanket to fall asleep.
7:00am: Crying. More crying. And even more crying.
7:30am: On the road, in the car. I say a prayer of thanks for portable DVD players.
9:30am: We arrive at Buffalo Children's, proud that we managed to keep him awake in the car.
We arrived early for his appointment, but the tech was ready to take us as soon as we walked into the lab. Dennis and Matt went down to get some snacks and wander around, and Nolan and I went back into the EEG room.
Nolan was not an eager participant, and yelled, "Don't want hurt me! No test!" down the hallway. The tech tried to shush him because of the "sleeping babies." Sometimes I forget that other babies can hear. Nolan, of course, didn't care, and screamed all the louder.
We laid Nolan down on the tiny pediatric exam bed, and the technician applied the EEG leads. Then she wrapped his head in gauze, and noticed he had fallen asleep. We needed him to be awake for the beginning of the test, then to fall asleep while it was recording. This meant we needed to wake him up- not an easy thing to do. Clapping, shaking, and lights wouldn't do it. The technician had to go over and pry his eyelids apart and shout at him, which caused him to start crying.
She started the test, but now Nolan was very wary and would not go back to sleep. We filled a sippy cup with apple juice, and I laid down next to him to coax him back to sleep. The technician took his history, so I gave her the laundry list: Posterior urethral valves, moderate hearing loss, severe central sleep apnea, severe GERD, and mild gastric motility issues.
Nolan fell asleep, and we let him sleep for about 20 minutes. Then we had to wake him up again, which seemed so cruel to do to an exhausted toddler. It took the eyelid-prying method to wake him again, but a lollipop calmed the crying in a hurry. She placed a strobe light over Nolan's face and we had quite the light show, with the strobe going at different frequencies.
Then we got to take all the leads off Nolan's head. The technician was absolutely wonderful and washed Nolan's hair with warm water while she was at it. Nolan had a goofy smile on his face while she was washing his hair, and she asked him, "Do you like that?" Nolan sighed and answered, "My like that." Apparently, the boy needs to visit a spa soon!
After that, we headed home and Nolan slept for about 1 hour in the car. That was the extent of his nap (when I say he doesn't sleep, I'm not kidding), but we did get him to bed by 7:30pm tonight.
The results will be sent to our pediatrician in 4-7 days.
8 comments:
What an ordeal! You must be frayed. I would be totally spent after watching him go through that. I know what you mean about forgetting that other babies can hear, I still do that :-) And "My like that" is so sweet in this context that it's heartbreaking. So if he's in bed, you better be drinking a glass of wine...
Oh Leah! What a day! Glad that it went well though. Did he have any staring spells while y'all were there? Is this the right study? Thanks for keeping us posted! We are praying for you guys alot these days!!
What a night it must have been.Kudos to you for keeping up with the posts even after such hectic and draining times. Take care and I really pray dear Nolan's results are nothing to worry about.
Krystal, I don't know if he had any when we were there. Almost all of the test was while he was sleeping (only about 5 minutes of flashing lights). He did have a lot of "twitches" while sleeping, though I have no idea if these were seizure activity or if he was just twitching in his sleep like most people do.
Heather, I know you know the trials of having very strange medical issues- I didn't end up with the wine, but crashed into bed at 8:00. At least the kids get to have a "normal" day today, with preschool and my MOPS group (mothers of preschoolers) and NO medical appointments.
I think both Nolan and Mommy need a spa day! Hope you get good results. And get some rest! :)
Leah, so glad this latest ordeal is behind you! It sounds like he did amazingly well under the circumstances. I'm holding my breath for the results. Waiting is so hard, I'll be thinking about y'all.
Oh my goodness... what an ordeal for both of you! At least, although it was unpleasant, there was nothing painful for the little guy. I love his, "My like that."
Hope you have many boring old daily days to enjoy after all that,
Julie
Oh poor Nolan.
I remember sleep depriving Luca as a 2 month old baby and it was awful and we weren't even able to do the test b/c he woke up.
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