We survived the sleep study!

To be honest I have been avoiding this sleep study for 5 years. Yes, for 5 years doctors have recommended it and because Tiara’s seizures were always the priority this outpatient study continued to be put on the back burner.  After her last hospital stay which required she go home on oxygen for sleep I agreed to finally do the study at the doctors urging.

We were supposed to arrive at the CHOC sleep lab at 7:30 pm, ready for bed with all of her medicine packed and any anything else we could possibly need for 12 hours.  I kept avoiding the topic so much that aside from my immediate family, the rest of my family had no idea we had to spend the night Monday.  I figured if I didn’t think about it too much, it wouldn’t be as bad.  Trinity had her first St. Joachim’s softball game Monday afternoon and it didn’t end until 5:00pm.  As we were driving home I realized I didn’t have time to cook dinner, clean it up, pack and be out of the house by 7:00 so we picked up food to go.  Totally against my weekly protocol since it wasn’t Tuesday, in which case I allow myself to buy Taco Tuesday for the girls and Lou.

Once we got home with the food it was already 5:45 and I was beginning to panic.  I packed all her stuff, changed her clothes, washed my face, changed into my sweats and crushed all the meds.  Lou was working the late shift so Tabitha had agreed to take care of Trinity for me.  So nice having a 20 year old in the house at times like this.  TT and I took off down the 55 freeway just when I realized I had forgotten to give her a breathing treatment and I hadn’t packed the neubulizer.  I didn’t have time to turn around and go back home and once in a while she will miss a treatment but we had sat on the grass during the game which always causes her allergies to act up, so I was really worried.

Well, I decided to keep going and see what happened.  She started to cry on the way to the hospital because she realized where we were going and didn’t want to spend the night but I assured her it was for only 12 hours.  Plus we started singing Rod Stewart, “It’s a heartache”  her newest favorite song and she soon forgot.

Once we valeted the car, I decided to pay in advance just in case we had to leave in the middle of the night. 

We were shown to the basement to a very nice sleep study room with 2 beds.  By this time it was 8:15 so I gave Tabitha her medicine so we could get her to sleep quickly and then start placing all the leads on her head, face and legs.  Lots of stuff!  I told the technician that we would do our best but if she woke up in the middle of the night and started tearing off the leads we would probably just leave.  I couldn’t deal with fighting her during the night.

Everything was in place and the machines were working just as I was about to fall asleep at 10:30 when the technician came back in.  “Tiara just took off her nasal cannula, can you help me put it back on?”

Me:  “Of course.”

We got it back on and I went back to my little bed.  At midnight here comes the tech again but she seems a little stressed.

tech:  “Tiffani, the cannula has condensation on it and she is desatting, can you help me put a different one on?”

me:  “Ok!”

Once again we change it out and for some reason the new one doesn’t calibrate, which I have no idea what that means except that we had to do it again.  By this time I am starting to get super cranky and frustrated.  I hadn’t anticipated staying awake all night, but then again I like to live in fantasyland as much as possible.

tech:  “I am going to have to put her on 1 liter of oxygen because she is satting at 88 and I am not allowed to let her go that low.”

me:  “fine, I don’t care, do what you have to do.”

Back to bed only to be awoken by the tech again at 3:15am.

tech:  “Tiffani, Tiara is calling you she is awake.”

I jump out of the bed and look across the 2 feet between our beds and see Tiara’s eyes are open.  Once she sees me awake she starts singing and saying “breathing, breathing.”  I try to get her back to sleep and realize it isn’t going to happen.  She does this at home when her asthma is acting out and once I give her the breathing treatment she usually goes back to bed with any luck.

Me:  “Ok we are going to call it a night and go home.”

tech:  “That is fine, we got lots of great data.  Let’s take off the leads and you guys can go.”

So we left CHOC at 3:45am and were home by 4.  Of course Lou had the top lock on so I had to ring the bell and scream through the door until he finally let us in.  This happens to Tabitha all the time, so I felt her frustration as I was trying to get into my own house in the middle of the night.

We finally got back to sleep only to be awoken by the alarm at 7am which signaled me to get up and force Trinity to get out of bed and get ready for school.

The good news is that we finally finished the study and I hope we will never have to do it again.  Fingers crossed.  Plus, I tried to return the Oxygen tank last month but I needed a doctors order so it is still in our room.  Looks like I got lucky on that one since she apparently still needs it.

Have a wonderful Wednesday!

xoxo tiffani

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