To Sleep or Not to Sleep; That is the Question

"Twilight"

Oh how I love my sleep and for me that is the irony of being the Doodle’s mom.

Seriously, I have not had a good night sleep since before the Doodle was born. The last trimester of pregnancy I was so uncomfortable and had to pee so much that solid, uninterrupted sleep was not in my forecast. Then he was born. And he was never a good sleeper. He would wake himself up all night long with these weird-falling-bad-dreams and startle himself awake. I couldn’t wait for him to grow into becoming a good sleeper. That never happened. Just to get a few hours of sleep I allowed him to sleep with us. Because God forbid I moved him or even sneezed, he would wake up and be awake for hours, crying.

His entire infant life he would hold his breath and stop breathing while he slept, for up to 25 seconds. I would shake him to wake him up so that he would start breathing again…then he would gasp for air; which most of the time woke him up. I found out later after several doctors’ appointments that he had severe sleep apnea at just age 2. Part of what they thought caused the sleep apnea were his enlarged tonsils and adenoids. This made sense because he was constantly sick with upper respiratory issues and colds. So again, sleep apnea was interfering with his sleep (and ours).

Then at about age 2 1/2 the seizures started. The big, scary grand mal seizures—if you’ve never seen one it’s about the worst thing you could ever watch someone you love experience. It’s the most awful and helpless feeling I’ve ever had in my life. So the doctors thought maybe the sleep apnea and lack of oxygen to the brain could be a contributing factor to the Doodle’s seizures—so we elected to have his tonsils and adenoids removed immediately; hoping that would solve everything. Nope. While having them removed has helped with him not getting sick so much, the seizures kept on coming. And the sleeping never really got much better either. He’s still a light sleeper who wakes at least 5 times a night.

So to monitor the Doodle’s many seizures and try to get him the best sleep possible, I would sleep with him and cuddle beside him. Which, besides being a light sleeper, he now cannot sleep on his own. He’s now become so dependent on someone sleeping next to him—he can sense when he is left alone in the bed—even if it is just in the middle of the night for me to get up to go pee for 3 minutes.

We’ve done everything we can to accommodate his sleep issues. We even bought a King bed because he’s pretty big and likes to crowd me to the edge. Yes, he’s been known to push me out of bed a few times. Lately, he’s been having more and of the scream out, stiffen up seizures. It might look like a bad dream but his eyes roll back in his head and he usually stiffens his legs or arms. These last only 3-10 seconds but leave him a little disoriented (and me too) and then he usually goes right back to sleep.

Last night he had around 10 of these episodes. We really need to get him into Stanford to do another sleep study but that will be brutal on him. Immobile and stuck in a bed for 48-72 hours. The thought of it gives me a panic attack.

Laying there last night, listening to my hair grow because I could not get back to sleep, I couldn’t help but remember how sleep used to be one of my favorite things to do. I cherished my sleep and sleeping in. I could easily sleep until noon. The last time I had really good, uninterrupted R.E.M. sleep was in 2007 when I underwent hours of sedation dentistry. 

I had just returned from a 3 night trip to San Diego in a plush 4 star hotel with a King bed all to myself…crisp white sheets, a down comforter and black out curtains and do you think I was able to get any sleep? Nope. Now, I cannot sleep without that little back-kicking-sweaty-head assaulting me all night long. I actually missed his Doritos breath blowing my hair back and his one leg draped over me. That’s my ironic sleep story and I’m sticking to it.

Our Little Insomniac

One word to describe last night. BRUTAL...

I truly felt tested and punished all at the same time. Dominic would NOT go to sleep. We went to bed at 9:00 and he was wound-up to the point of madness. The anti-seizure medicine is making him crazy. One of the zillion side-effects is insomnia. Great. We tried everything: the bottle, the chewey, the blankie, the hand in my shirt, the deep-pressure knee rubbing, the Backyardigans, nothing worked. He cried and whined and kicked and screamed, completely inconsolable. Completely insane. I put the pillow over my head and he thought I was playing peek-a-boo. Throw in our meowing-in-heat-whore-of-a-cat, Coco, and you have the makings of One Flew Over the Cookoo’s Nest Part II. 4 1/2 hours later, he was finally asleep.

The Doodle has never been a good sleeper. He has always been somewhat of a cat-napper. Even as an infant, he would always startle himself awake. Now, looking back, I wonder if those levitating startles were some type of seizure…

Those who know me, heard me say a million times over that this time around I was going to do things differently. This time, the Baby was NOT going to sleep with me until he’s 6 years old. This time, the baby was sleeping in his own crib whether he screamed or not. After all, it gets much easier the second time around right?

And so it went, Dominic being the lightest sleeper in the history of babies would not fall asleep on his own. I breast fed, so he would fall asleep on the booby and then wake up the minute I tried to lay him down in the crib. I could sometimes get him to sleep on his own in his swing. So for the first 15 months of his life that is where he would “nap”.

Dominic was always a loud snorer, one of the characteristics he picked up from his father…we used to think it was cute how loud he would snore and then he would stop breathing and it stopped being cute. I noticed throughout the night how he would stop breathing like he was holding his breath for 10 seconds or more. I did my Web MD self-diagnosis and determined that the Doodle had (severe) sleep apnea. As he got older and his tonsils and adenoids grew, the sleep apnea got worse and worse. I would sit and count the seconds he wasn’t breathing and then shake him awake so that he would breathe. This went on all night long. No one was getting any sleep with this routine. Remember the part where I earlier swore this one would not sleep with me? Well, that went out the window. He has always slept with us and basically, I have not had any good sleep in almost 3 years now.

After the seizures started in January, we thought it was a possibility that the sleep apnea and lack of oxygen could be a potential cause—so we had his tonsils and adenoids removed. In the hospital after his surgery, I had to lean down and put my ear next to his mouth in order to hear him breathe. No more snoring like a tractor from the Doodle. The surgery completely worked! I could now cross Sleep Apnea off of his laundry list of medical issues. Yay. But, unfortunately, the sleep apnea had nothing to do with the seizures. The seizures kept coming, more and more and continue to come with a vengeance.

I took this picture of Dommy today sitting still for a minute wearing his “helmet”. He doesn’t cry and fight me anymore, he’s completely used to it now. I ask him when he wants to get down and play, “OK, what do we have to put on first?” and he points to his head. This bike helmet didn’t used to be white. It used to have a blue plastic coating all over it until he’s fallen and hit his head so hard, so many times, that the plastic has busted off.

I used to wish the Autism away. Now, in retrospect, I would gladly trade the autism for the seizure condition any day. So if you see me, be gentle. The Doodle and I have matching dark purple circles under our eyes for a reason. They tell a special story.