The no sleep sleep study.


**here are the captions for the above pictures:  WHAT!??? mom gets to stay too!!???  Ummmm………’re taking these things right off again right?  I don’t like this anymore.

So obviously last night was the big sleep study.  Before going in for it we go to have a great dinner with Nurse Ashlie and Nurse Corrine (and her husband who we finally got to meet!).  It was great.  Stacy was planning on staying with Ashlie since they told us only one of us would be able to stay with Greyson.  Well when we got to the sleep center they said Stacy could stay too.  This put a worried mom’s heart somewhat at ease. 

The sleep study was to go from 7:30pm to 7:30am.  Well Greyson kept to his usualy bedtime and didn’t get sleepy till around 11pm.  So the first part of the study was just filing out paper work and talking to the tech (he had his own personal tech for the night).  Then at 11pm we fed him and wired him up.  He did really well with all the wires until they put the C02 monitor in his nose and we placed the cap on his trach.  This began a pretty rough night. 

Greyson has been doing pretty well with the trach cap, but the couple times he has fallen asleep while wearing it his sats immediately dropped and we had to take it off.  So we weren’t expecting to much at the sleep study.  Well they had to monitor him for at least 6 hours and the good news is he had the cap on for close to 6 hours.  The bad news is he was working so hard to breath that it was awful to watch.  He would fall asleep for about 10-20 minutes before his c02 level would rise and his oxygen saturation would drop.  Then he would wake himself up crying.  This could increase his oxygen saturation and drop his c02 level.  This went on basically from 11:40pm-5:30am with one exception.  Around 3:30am he woke up (completely  not just waking a little and crying).  He actually looked almost happy and began breathing easier and had good numbers again.  This lasted about 20 minutes while we chatted with the sleep study tech.  Then he fell back asleep and the horrible process started over.  At 5:30am they let us take the cap off and put his Passy Muir valve (the one way valve that allows him to breathe in through his trach but out through his nose and mouth.  Immediately he fell deep asleep and didn’t move again till we woke him up a little after 8am.  His breathing was no longer labored, his numbers were good, and he was sleeping peacefully.  Now you may have noticed the sleep study was supposed to end at 7:30am, but we didn’t wake Greyson up till after 8am.  See after he fell soundly asleep Stacy and I fell alseep as well.  They let us sleep till 8 before waking us up since they knew we had a rough night.

So what does all this mean?  Well we won’t really know for a couple weeks till we meet with the Dr. again.  It does let us know that he is not ready to have the cap full time yet.  The really possitive thing though is that it shows us that he can bring himself back up when his sats drop and his c02 rises.  Granted it doesn’t do much for the sleeping, but he did not require intervention (aside from some parental comfort, singing, and such).  This is a very positve thing.  Now we will have to wait some more to see what his Dr. has to say about how things went. 

OK just wanted to get this out there for those who are curious, now we are all going to bed for a nap.  We are excited that we have a night nurse tonight so Stacy and I can try to get caught up after a VERY long night.

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4 thoughts on “The no sleep sleep study.

  1. Bob, Stacy and Greyson- Big hugs all around. We are so glad you survived the night and Stacy got to stay. I am sorry it was hard on all of you. Hopefully you can catch up on some sleep tonight. Thanks again for a great dinner! Ryan loved meeting you all. Sweet dreams.

    -corinne and ryan

  2. That is awfully hard for a mom and dad to go through not to mention Greyson who doesn’t understand the reason behind it all. You guys are troopers and I know something good will come out of it all but my oh my I wish it could be easier. I hope all of you have a much much better night tonight!

    Love Grandma Terry

  3. What a rough night at the test. I’m sorry things didn’t go the best way they could—I was hoping and praying. But, am so pleased to hear how well he is doing. This boy of yours is a fighter! And he’s come so far so fast! I’m so in awe of all that has happened for your family and for all involved….hope to see you soon! Love, Gloria

  4. Hello Westfalls,

    We were surely thankful to read the news you shared re the sleep study. Greyson, you are surely a trooper and it sounds like mom and dad participated in the sleep part too. Hopefully they got a good nights sleep the following night.

    You are all in our prayers.

    The Taylors – Judy & Jim & the Johnsons – KJ & Laura

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