With very mixed feelings, I decided to take the night off and sleep at RMH without Raya tonight. Mostly because there will be someone in her room all night long monitoring her symptoms so they can be recorded for the guy that will be evaluating her impedence test results. Why would I want to sleep in front of a total stranger whose job it is to stay awake all night and watch my kid sleep, which means he/she would also be awake all night to hear me snore/talk in my sleep, etc. when I could sleep in my new favorite sleep number bed at RMH? Not to mention the fact that she cried pretty much from 1:00 when she was admitted & taken to her room until 10:30 when she finally FINALLY went to sleep. However, it was still tough to leave her there because I've never slept more than 10 feet away from her just in case she needed me to roll her over so she didn't choke when she threw up. Part of me wants to feel that good ol' Mommy guilt, but a bigger part of me is reminding myself that this is the best opportunity I'll get to not have to worry about anything for a night since she'll actually have one-on-one care all night. The best part is that someone else gets to clean up her 5am vomit(s) for a change. And she'd better vomit at 5am, dangit. I didn't fly all the way to Ohio with her so that she can decide not to throw up in the morning!!
We met with the nurse practitioner today and then later we met THE doctor that we're here to see. I felt like I was meeting a celebrity because any time someone would ask who we were here to see and I'd tell them, they'd do one of those, "Ohhhhhhh, you're here to see HIM." things and then tell me how people come from all over the country and all over the world to see him. That makes me feel special. The fact that he agreed to see us at all and then made it so that we got in in 2 months instead of 4-6 months has helped to get rid of my self-doubt about the fact that Raya's problems aren't just a simple oversight that we've made and that there is actually something wrong with her body. I think it's pretty obvious that there's something wrong with her, but it's still hard to not think that at any given moment, somebody will just say, Oh, all it is is xyz, why didn't you figure that out??
OH MY GOODNESS, I almost forgot the most EXCITING part of my day/week/YEAR. Remember this annoying contraption? i.e. the 3 oz plastic bottle with the tip cut off taped to her extension tube to catch the fluid draining out of her stomach? Well, when we got into her room today and I showed it to the nurse and asked her if they had a new lid I could replace it with and/or something better to use, she brought me the most beautiful little plastic drainage bag that plugs into the extension tube and has a little clip to hook it to her clothes so that when it starts to collect a lot of fluid it won't rip the tape off her little tummy. I was SOOOOO ridiculously excited about it! What does that say about me that I got excited about a G tube drainage bag... When we go home I will post a picture and then maybe my excitement will be understood. :)
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