Sleep Study

Last Friday, Niko and I spent the night at the hospital to conduct a sleep study.  As I have mentioned before Nikola is a horrible sleeper.  On good nights, she wakes up every hour.  On bad nights, she wakes up every 10 – 30 minutes.  The ultimate worst night was in Santa Fe when I was out of my bed, shushing her, rocking her, and singing to her from 12:30 am to 5:30 am.  She cried for five hours straight that night.  She’s also not a good napper during the day either. 

I have not had any real sleep for over five months now.  But poor Nikola, she’s just a baby.  She needs the sleep more than I do. So we decided to do a sleep study to see if we can determine what is causing her terrible sleep habit.

I knew it was not going to be fun.  I’ve read about it.  But it was worse than I expected.  We conducted the study in Kaiser’s sleep lab in Santa Clara. 

The room was decent enough.  It actually looked a bit more like a bare bones hotel room than a hospital room. 

We arrived at 7pm.  The nurses instructed me to fill out the forms as quickly as possible so that we could get started right away.  They informed me that we would be finished by 5am and I would have to clear out of there by 5:30am.  Niko usually goes down for bed at around 6:30pm – 7pm so she was already exhausted. 

I mentioned that Niko is a very poor sleeper and asked if that would derail the study. 

The older nurse said, “Well let’s hope that she sleeps better tonight.  There is another sleep study patient in the room right next to you.”

Me:  “I know for a fact that she will wake up many times tonight.”

Older nurse:  “For tonight, try to make her sleep more.  You don’t want to keep the other patient up.”

Me:  “I’ll do my best.” @%*#!  If I could make her sleep better, we wouldn’t be here. 

While I was filling out the forms, I heard the nurses chatting in the hallway.  One of them said, “hmmm… I-Cell Disease”.  Clearly she was reading Niko’s charts.  The younger nurse said, “Yeah I read about it last night.”  But her voice was so sing-song (and not one that you would use when referring to a terminal disease affecting a baby) that I assumed she most likely glanced over the subject rather than actually reading it.

Then the torture began as soon as I completed the forms.  What appeared to be hundreds of tubes and wire leads were attached to Niko (and certainly not without a valiant fight from her).  She had about 8 leads attached to the top of her head, 4 on her cheeks, 1 on her chin, 1 on her forehead, 5 to her chest, 2 to her stomach, 4 on her legs, 1 oxygen monitor attached to her foot, and a cannula tube inserted in her nose.  Then they wrapped her head with a bandage to keep everything in place.   

Applying a colour filter makes these photos a little less heartbreaking to look at.

Nikola screamed her bloody little head off.  I think the whole wing of the hospital must have heard her.  The younger sing-song nurse said to Niko, “when you grow up, you can remind mommy of this.”  So obviously she didn’t read much about I-Cell last night.  If she had she would know that Niko will not “grow up” to remind me of any sleep study.                

I know that the wire invasion did not cause her pain, but it was absolutely heartbreaking to see her like that.

I swaddled and nursed her and surprisingly she fell quickly to sleep.  I suppose that fatigue overrode the discomfort.  I was hoping that she would sleep long enough for them to gather enough information for proper results.  

But in less than an hour, the nurses came in.  They were concerned that the oxygen monitor was not working.  It showed that her oxygen level dropped down below 80% (while it should be above 95%).  So we removed her swaddle and replaced the oxygen monitor with a new one. 

She dropped off to sleep and then the nurses came back in.  Her oxygen was indeed low.  So they added another cannula tube into her nose.  This new one provided her with oxygen while the other one measured her breath.  The two tubes could not fit into her tiny nostrils so they wrapped more and more tape to her face.  Nikola was so upset and so sweaty.  She was twisting and fighting so much that everything kept coming off, despite all the tape and glue.  It was so difficult to comfort her.  Not only was it hard to find an exposed part of her face to kiss, I had a hard time picking her up due to all the wires.    

Here you can see the two sets of tubes that barely fit into her nostrils.

Watching Niko go through this horrific experience, I keep thinking that this entire ordeal seems so outdated.  No one should have to go through this in 2012 to conduct a simple sleep study.  As you watch technology and equipment improve over the years you say things like, "Remember when mobile phones weighed over 5 pounds?"  Or "Remember when you had to send a telegram for emergencies?"  Or "Remember when sleep studies looked like this?"

  

So the horrible night spent at the hospital showed us that Niko does need oxygen.  I received a call from the sleep doctor today.  He informed me that Niko has central sleep apnea.  Her brain temporarily stops her from breathing during REM.  They saw that she was desatting and her oxygen level dipped down to 74% during REM.  He recommends that we put her on oxygen for sleep, through a nasal cannula, and to repeat the sleep study in 3 – 6 months.  Ugh!  I really don’t want to do this again.    

He told me that central sleep apnea is nothing to worry about because babies will usually improve as they age and become stronger.  I asked if Niko has a chance of improving because she has I-Cell.  And he asked, “What’s I-Cell?”

I’ll wait to speak with her pulmonologist.    

So this might be the beginning of Niko’s career as an oxygen user.  I was hoping to avoid this for as long as we can.  But who are we kidding?  My poor baby.  Why am I afraid of the tubes?  They are here to help her, make her more comfortable.  But all I see are tubes, and tanks, and pumps.  And the equipment scares me.  This sleep study has made me appreciate, and never take for granted, the time that I get to carry Niko without wires and tubes.

This reminds me of the short-lived ridiculous trend of oxygen bars.  In the late 90s, anyone can slap on a pair of high heels and trot to the nearest trendy bar or nightclub to breathe in tropical flavoured oxygen through nasal tubes for fun.  In fact, I’m ashamed to say that one night in my early twenties, I was convince by friends to don a pair of 4 inch heels and insert a half inch hose into my nose at a night club. 

When life makes you confront your fears, thank goodness for stupid trends that make you see the humor in it.