Sleep Study = PASS!!!

Brooke had her sleep last week at St. Louis Children's Hospital. Brooke and I left around at around 1:30 p.m. After what seemed like forever, we got to St. Louis. I think we stopped 3 times before we even got to Divernon, because I would think about something and stop to make sure we had it with us. Add road construction and a pit stop in Collinsville, it took a little longer than usual. It didn't help that my stomach was in knots because I was super nervous. When we got to the hospital we made our traditional stop at the NICU and saw some of our favorite people. We then went to admitting where they told us what floor to go to. With the kind of sleep study she was having, they wanted us admitted to a regular room before going to the lab. We checked in around 4:30 and went to the 7th floor. It was pretty weird being back in a hospital setting. The beeps, the smell, the noises, YUCK! It really makes you appreciate the healthy children in your lives. After we got settled in our room, Brooke and I went up to the garden, wandered a little and waited for Brian to arrive. We drove separately because Hadley's end of the year program was Wednesday morning and we weren't sure when we would be able to leave the hospital. Of all the days I could have scheduled the sleep study, Hadley's play is the next morning!!! I, of course, did not know that when I scheduled the appointment. For the next couple hours, we just kind of hung out and waited for them to tell us they were ready. The sleep lab is on the 9th floor so we had to wait in our room until they let us know it was time to go. It was close to 9:00 before they got us, and needless to say, Brooke was ready for bed.

Brooke playing with her dolls while we wait.

In her pj's watching t.v. (Still waiting)

When we got up to the sleep lab, Brooke quickly noticed all the wires. We had been showing her pictures of kids having sleep studies done, so she could see all the wires and probes. It took about 30 minutes to get her all hooked up. She had glue and probes in her hair, probes on her chest, bands on her chest and belly, probes on her legs, and then they told her to go to sleep. Really??? I don't know how she was able to sleep, because I was uncomfortable just looking at her.

Such a sweet girl! She tolerated everything very well, and even helped the tech at times.

Sleeping soundly... Glad she did, because I sure didn't :)

These next few pictures are taken by Brooke

The next morning at 5:45, they came in to take a blood gas, and we headed back to our room on the 7th floor. We gave Brooke a quick shower to try to get all the goop out of her hair -- I didn't get it all out by the way. It was thick and her long hair didn't help!! Then, we waited for the doctors to arrive for rounds. We were super nervous that we wouldn't get out of their on time, but thankfully they rounded with us first. It also helps that these are the same doctors we have seen since Brooke was in the NICU, so they were super cooperative with us. Unfortunately we had to leave so quickly, I didn't really get to talk to them as much as I would have liked. I left feeling pretty unsure of the study and full of questions, but I couldn't miss my little leopard in her Noah's Ark play! This is just the beginning of needing to be in two places at once.

So... we left with these three pieces of information...

1. Brooke DID NOT need to be plugged in, which is good!

2. Her blood gas results were surprisingly good!

3. You will get a call from us with the official results, which could take up to two weeks!!

Woohoo!! Even with those two good things, I will still nervous that the official results wouldn't be very good. She had been a little restless, even crying at one point during the night, so I wasn't sure they received an adequate study. The tech asked me if it was normal for her to wake up crying and I informed her that we were in a strange place and nothing is "normal."

Once home, we wait, and we wait, and I worry and I worry, and I finally email the doctor after six days. :) I was going crazy and just wanted to know if they had heard anything. When she called me, she said that she had actually just thought about where Brooke's results were, gotten the results in her inbox, and then my email in the same sitting. We were all on the same page!

So........... now for the official results...........

BROOKE PASSED HER SLEEP STUDY!!!!!!!

That's right, she passed!!!! The test showed that her CO2 levels did not rise during the study, her oxygen levels were a little questionable, so we are having a study done from our house that downloads right to the doctor's computer. Isn't technology great?!?

What does this all mean?? It means that Brooke sleeps fine OFF her vent and we are free to have her sleep OFF the vent as much as she tolerates. They would like her to be vent free for at least six months and get through a couple sicknesses before we make any major decisions, but we are on our way!!! Thank you all for the prayers.

I promise to get to my other blogs, but in my defense, it's been kind of busy around here. I had asked our minister at church if he would be willing to say a prayer for Brooke's sleep study and that turned into me talking at church during his Mother's day sermon. Oh boy was I nervous. He was preaching on Mary and some of the struggles she faced as a mother. One of those struggles was watching your child suffer and knowing you can't do anything to help them. I spoke of our struggles while Brooke was in the hospital. Brian and Brooke were on stage with me and by the 4th service, Brooke was stealing the show! It actually felt really good to talk about it and share our story. Not that I want to get in front of that many people all the time, but I was happy to share. If you would like to hear it, here is the link.

www.rochesterchristian.com/#/resources/media

if you click on the "launch media player" button it will take you to the list of sermons and you can click on "Mother's Day" and then click play. That should work, I hope. I think I start talking around the ten minute mark.