Monday, May 18, 2015

More on the sleep study

I'm thrilled to report that she slept all night with the cap on!

The night was a long and torturous one, though.  For me, I mean.  Every time one of the techs would come into the room, I was so afraid they were going to tell me we had to remove the cap.  I held my breath each time, and then they would say, "Just replacing an EKG lead" or something like that.

There were parts of the night I found unbearable.  For one, I couldn't see a pulse ox.  So, I had NO idea what her sats and heart rate were.  That was super weird.  In fact, it was so weird that my crazy imagination took over and I started to wonder if something happened to the techs.  What if they left and weren't watching her numbers?  What if only one was there and she passed out, had a heart attack or was killed by a jilted ex-lover?

Harlie would sound good for a few minutes, and I would relax.  Then she would sound bad.  Then good again.  Then bad.

Every time she would make a noise, I would will her to stop.  At around 3:30 am, I woke up to hear her coughing.  Then she made a lot of noise.  I wondered if I should get up and suction her.  But, I made myself stay put.  It was so incredibly hard.  Somehow she would settle down and the noise would soften.  Then I would breathe again and think, okay, it's going to be okay.

Then she would make a squeaking noise that I had never heard before.  And I would hold my breath all over again.  And I would look toward the door to see if footsteps were coming.  There were several times that I thought for sure they would come in.

It was awful.  And each minute crawled by.  Slower than the last.

I think I slept maybe two hours.  And I couldn't go back to sleep after 3:30 am.  Finally, just before 6am, the tech came in and told me it was OVER!!!

SHE MADE IT!!!  I made it!

That was the first night she ever slept while breathing through her mouth and nose.

The tech said she did "great" and that she slept "well."  So, I take both of those as good signs.  What's scary is that she said it printed out 1,000 pages!  That sounds like a lot of episodes to me.  But, what do I know?  Apparently each episode has to be scored, so it takes a while.  The WORST is that she said they are running at a 4-6 week time frame to get the data read and sent to the doctor.

I asked her if I should be hopeful, and she said she couldn't answer that.

Well, I am anyway.  I think things look good for a future decann.  But, we have to wait and see.  Her ENT said he would get in touch with me after he gets the report.

I personally think a few month's wait for the study, surviving the study itself, and then having to wait another 4-6 weeks for more information should qualify and cruel and unusual punishment.  As if the past eight years didn't seal the deal.

Oh, before I wrap this up... we told Harlie that we were going to the hospital to sleep there and why.  On the way up, she coughed and then screamed, "I need a doctor!"

Then, as soon as we got to the fourth floor and walked into the sleep lab, she started fake yawning and said, "I'm tired."  I guess she was trying to get in the mood.  She was so funny.  And so very good.  I know I talk about how hard things are - but she really does make things better.  She's so easy going and she has the best disposition for her life.

I'm so thankful for her and for where we are right now.  Thank you so much for all your positive thoughts and prayers!  I can't wait to be able to share more fabulous news.  In 4-6 weeks.  I'm so, so hopeful.

Much love,
Christy xo


Robin Kargoll said...

Wonderful news, so happy to hear it went well. When Faith had her sleep study 2 summers ago, I remember listening all night to every sound she made. I knew she sounded awful and then I noticed she sounded better towards the morning. I thought maybe she finally fell into a deep sleep (who could sleep with all that stuff on their head? ) but the Tech said, no, we turned on the oxygen around 3am (via nasal cannula). I knew then she failed. I think the results came came back with 30 apnic events per hour. Bummer, time for JD #3, then we'll see.
So happy for Harlie, she deserves it!!!

Donna said...

She is so funny!!! I am so glad that it went well and that you have something to be excited about! Xoxo

Betsy Hart said...

I love what a great attitude she has! I'm praying about the results!

Susan said...

I am very hopeful! - These sleep studies are torture. I'm glad that Harlie tolerated it well though. It will be a tough wait for those results. Hang in there. I hope it doesn't drive you crazy.

Anonymous said...

So after the study, does she sleep with the cap on at night until you get the results?