you know the one between parenting and advocating? The one that allows you to manage your child’s medical needs while still meeting their emotional needs. The one that permits the store of dates, times, appointments, etc while still allowing you to squeeze in play time during “free time.” Some weeks… it’s easy. Some days? It is damn near impossible.
Today? One of those damn near impossible days. One of those days that I spent the better part wanting to curl up in a ball, change my name, and sleep until tomorrow. It began with a “I actually need you, I am not just wrestling against sleep” kind of cry from down the hall. Of course, upon entering, the sheer aroma of the situation was enough to send me immediately downstairs to get wipes and a fresh diaper. OK, drama one of the day corrected. I needed a few minutes to regroup and fully wake up so I plopped down in front of the computer and set her up with some toys. Great. Phone. So much for that relaxing time.
Who is it? Ah… the hospital. Calling to set up a gastric emptying test… for 1 pm today! Which, is great news because it will let us know about what is going on with Alyssa’s stomach. The not so great part? Nothing by mouth for 4 hours prior… it is 915 now. Get permission to give her breakfast and meds if I haul it. Get that done, get the morning squared away, and load into the car. Did I mention that I need to get my tush in gear and get a new belt for the AC in my car?… well I do! So, we make it there all nice and toasty warm and make our way to admitting. The lady looks at me as if I am from another planet when I tell her that we have an emptying study to be done today. OK. Fine. It was only booked 4 hours ago. Finally, 20 minutes later we are nice and cooled off and get brought back. To MORE confusion. The way I see it they were confused as to what was today and what was Friday. Blah Blah we get it all squared away (or so I think) and Neil shows up just in time to walk with us to surgical waiting. Except then surgical waiting tells us we have to walk across the parking lot to the diagnostic center. Ummm… k? So, we head out to walk but as we enter the lobby we hear our last name called out from behind us. She brings us back to admitting (yes the place where we started). Apparently there are some serious wires crossed because they are still talking blood work. So, I take the orders that are for Friday off the top of the stack and tell them that all that is being done today is the emptying test. A few women go back to the back one saying “They don’t do the emptying at the diagnostic center”…So, the lady that originally started our paperwork comes out and hands it to us and says “Alright, head on over to the diagnostic center” … to which I quickly rebutted “The other woman stated they don’t do this test over there” … at this point my head is beginning to boil and Neil is giving me that “Please don’t get all crazy” look LOL! So, she tells us where to go and gives us vague directions. We get lost. Fun. Find a sweet lady to show us where to go. FINALLY.
Should be game over begin test… right? nope! HA. They need her to drink a radioactive cocktail so they can watch it filter through her system. The catch? They need her to drink 5 ounces in 5 minutes and they want it to be apple juice. Come on… laugh with me for a moment… hahahahahahahahhahaha. Whew. OK. If I could get her to drink random juice that quickly we wouldn’t be at the study. So, we convince them to let it be her formula. I turn baby einsteins on the iPhone, say a quick prayer, and beg her to just chug the bottle. She totally did. The test itself wound up going AWESOME. It is 90 minutes on her back, wrapped up, with a big flat camera about 8 inches from her face. I was actually shocked she didn’t go into panic mode when he lowered the camera thing down. She slept for almost an hour of the test and hardly wiggled at all.
As frustrating as the day was at least the test went off without a hitch. For that, I am grateful. My hope is that between now and Friday we get every detail pounded out so that we know what we are walking into. There are a lot of small things, but at this point I’m confident it has to go smoother than today! LOL!
Here’s a pic of her studying what was going on 🙂 She did so awesome even amidst the crazy of the day! She’s such a freaking trooperette!