Jun 18, 2013

Fathers Day Sleep Study

Sunday was Father's Day and the day of our long awaited sleep study.
The sun was shining and we had breakfast on the patio.

Evie painted a Voldemort bookmark to match the Harry Potter one Steve got for his birthday. 

Adrian made him a nice card with a photo.
Steve really is a great dad! I sent him over to my SIL's house with Evie and Adrian to spend some time with his dad, while I got Ainsley bathed, packed and ready to go. I met them there for a short visit (and dinner).
Steve's dad (My FIL who's British) and Steve's sisters (twins).
I had to be at the hospital at 7:00. It was the only date available so I took it even though it was Father's Day because the Botox to Ainsley's VC will not last long enough to wait for the next available date (August).

The sleep clinic is at Overlake even though it's part of Children's Hospital. It's a nondescript entrance and you have to buzz to get in.

We got Ainsley into her jammies and watching a movie we brought with us (they have a selection there too).

She was happily munching on alphabet cookies.....

But this was waiting for her.

The tech fed the wires through her jammies and Ainsley started to get nervous.

She doesn't like the sticky stuff...

...And really hates the pulse-oximeter even though it's just a thing on the finger.

But hates the electrodes on the head the most....

....and the ones on the face, and the nasal prong too.

Then once she was ready we sat back and watched an episode of Little Bear before laying down.

The equipment in the cabinet. The sleep tech is in another room, watching and listening through a camera. The electronic data transmits to where she is so she can see and evaluate things throughout the night.

Ainsley was on her back because of the wires and that position causes the most obstruction because of her tongue. She slept for 3 hours capped without the CPAP.  She sounded awful but did it. The sound woke me up so much that I could only sleep for a few minutes at a time. 
I slept in bed next to her holding her hand at first. I swear I heard her stop breathing for 10 seconds and arouse from sleep, not once but a few times throughout the night. When she seemed asleep I let go of her hand and tried to sleep.  Sometimes she would reach out like she wanted me. Or her hand would go up to the cap. She has on several occasions pulled the cap off while sleeping. The tech said the equipment showed she was actually still asleep even though she seemed awake to me and I was to "leave her alone".
It really went as well as possible considering what it is. All of the preparation at home with CPAP and the cap on was for this. And it paid off. Because the last thing you want is to go through all this and have the child pull off the wires or the mask. Or not sleep because it all feels too weird.
She had to be able to wear the mask with all this stuff during the sleep study in order to gather info about how well CPAP would help her IF we were to remove her trach. (This would be with continued Botox injections.)
The tech isn't supposed to talk about how it went, but I think the pressure setting went pretty high, we have to wait for the doctor's interpretation of the data. I don't know what this will mean for making the decision. Normally it takes 6 weeks to get sleep study results. I've e-mailed the pulmonologist. We has the swallow study next Tuesday. After all the info is in we will have a tough decision to make.
5 minutes before the study was done Ainsley woke and the tech removed all the gear.

She was so nice and gave Ainsley a special "prize" for being such a good girl a set of 12 little animals. Their hands velcro together. Cute. She loved it!  By 7am we were headed home to meet our nurse.

Here is a shot of the room. It's kind of like a cross between a hotel room and a hospital room.
There is no shower in the room though but I brought a head scarf.
It is REALLY hard to get the paste out of the hair and the adhesive off the face and legs (think free wax job).  After about 45 minutes in the bathtub, using mineral oil and Dawn dish soap as well as conditioner she was good enough to go to school. We only have a few days left and her special ed's class party was in the afternoon.
Even though she slept, it really wasn't the best night's sleep. So after she came home from school I had her nurse put her down for a nap (wish I could have done the same). Since the study was over we removed the cap, no CPAP. And she slept so comfortably and peacefully.  What a contrast. If only her airway allowed her to sleep like that without the trach so we didn't need the stupid CPAP. But that is the reality of our hard choice. Trach or CPAP. For life.
Since Ainsley has always had a trach I really don't know what life would be like for her without it. Parents of kids who've gone through the process always say it's great for the child in many ways when they are finally able to get their trach out.  Even when they have to use CPAP. I'm just not sure if it's worth it. Nor am I sure that her airway is good enough. There are many factors to consider and it will be a tough decision. I will be interested to hear what her doctors think after all the info is in. Ultimately, like so many things, I think the final decision will rest with us....the parents. We are the ones who will either care for the trach or hassle with CPAP and the doctors know that there are benefits both ways, and also risks.  Hopefully together we will make the decision that is best for Ainsley, and hopefully soon so I can put it out of my mind and just live life. Summer is nearly here. Steve is home at night and the weekends and we are looking forward to family time.
Looking back over the past 6 years I sometimes can't believe all that Ainsley and our family has been through.  Even something "little" like a sleep study.  It takes a lot of energy. I'll be glad when we are past this and life returns to our normal. Thanks for caring and checking in on us.

1 comment:

  1. Wow! Since it's nearly 1am here, I could only skim this one - for now. I have to say that I LOVE how you take so many pictures. And I love you listing the things she hates about a sleep study. I don't know if you meant to be funny, but it was.

    Okay, will come back and read more closely tomorrow!

    Love ya!
    Christy xo