Between our clinic appointment and our next appointments Audrey was going down hill very quickly. She was bleeding all the time, had fevers all the time, and would hardly eat anything. This was a very busy time because school was getting ready to start and I was trying to prepare my class for the new school year. STRESSFUL. The day of her sleep study I spent the day preparing my classroom. It would be my last time to come in before school officially started and Audrey and the girls were with the babysitter. On my way home I got a call from the sitter. She told me Audrey was very crabby, had a fever, was bleeding badly, and wouldn't stop crying. I didn't know what to do. I felt like no one was listening or helping the way we needed them to. I knew we were planning to drive to Riley that very same day, but I didn't feel like they were going to DO anything, only run tests to make a PLAN to do something. I was frustrated and at my breaking point. I also was afraid they wouldn't even go through with their tests because Audrey was so sick - but it was all being caused by her tongue! I called my mom and she told me to call our family doctor. Although they were minutes from closing for the day they told me to bring her right in. I went home, packed an overnight bag for Audrey and I (for our trip to Riley, IF it was even going to happen now) and I rushed her to the doctor's office. My doctor took one look at her and told me to leave for Riley NOW. She called the doctors when I was on my way and voiced all her concerns. This is the first time I learned Audrey hadn't gained any weight in several months and was in the 3rd percentile for her age/gender. This is also when my doctor told me that they may decide she needed a feeding tube in her belly. I was terrified. I didn't know what to do or what to expect. On one hand I knew Audrey needed help, but on the other hand I didn't want her to go through more pain and have a HOLE in her belly. I drove to Riley - just me and Audrey praying all the way for help and answers.
When we got to Riley we went for her sleep study. She was so uncomfortable. I had no idea how she was going to get through the sleep study. She had wires all over her. The people running the tests basically ingnored everything I was telling the and I felt like I was right all along and that no one was going to help. Thankfully we got through the sleep study. Good news: Audrey did not have any distress while sleeping. This was God's work, if you had seen her tongue you would have wondered how that was possible.
Next we went on to have her feeding study. I have to admit, this test was pretty cool. Audrey sat in a special seat and they had something that looked like an x-ray machine taking pictures of her mouth and I feed her various things. This machine projected onto a screen where you could see where the food was going. Bad news: Audrey was asperating food into her lungs. This explains why she stopped wanting to eat. More bad news: Audrey needed to have a feeding tube - we were staying at Riley. More bad news: it was the weekend - no answers until Monday (this was also when school started for me - things were complicated).
The worst part - I was alone. I had to be Audrey's voice and I had no idea what to do.
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| Audrey and I were in for the long hall - admitted to the hospital |
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