Richmond preparations for Cincinnati

We're finally in the process of crossing T's and dotting I's for our upcoming trip. Annabelle is aware that were traveling soon and Madelynne knows that she will be staying behind because she has school. The anticipation is growing, but so are our frustrations with Annabelle's health, so we are all very much looking forward to this visit.


I mentioned before that scheduling this time, was extremely difficult. There was a lot of strategic planning that took place to get the appointments down that we needed. I am still waiting on a date confirmation for the Wheelchair Clinic (they're accommodating us individually after-hours because we couldn't get in while they're available). The only other appointment I couldn't manage to figure out was the Gastric Emptying Study.


This procedure needed to be performed enough in advance to have the results before we scope and do surgery. We know something is terribly wrong with Annabelle's GI system, but we don't know where the problem lies, the Gastric Emptying Study will allow us to see how the food she eats, moves thru her GI system, how quickly, efficiently and if there are any pauses/issues/obstructions/blockages etc along the way. If we can pinpoint where an issue is in her GI system, we can take a closer look around the area when the doctor performs the surgery and scope in Cincinnati. With the help of our team in Cincinnati, we were able to schedule the scope in Richmond last Friday at 9am.

Gastric Emptying Study
We arrived at the hospital around 845a, cranky but excited. She needed her formula but wasn't allowed to have anything before the test, she was hungry and nervous but hid it well. On the way to the hospital, we sang songs and I asked if she was alright or wanted to talk about anything, her only question was "Will there be any pokes today?" I couldn't guarantee there wouldn't, but told her that I was almost sure we would not have any pokes.. she seemed satisfied with that answer.

Once we were checked in and bracelets on, they escorted us to our room in Nuclear Medicine where they explained the procedure. Annabelle would have 10min to eat the scrambled eggs that are impregnated with radioactive dye, after that they will do a scan of her stomach. From there, we would do another 2 1/2 min scan every hour on the hour, for 4 hours. Once everything was explained, our nurse asked the routine questions, "Why are you having the study? What concerns do you have? How do you spell that? Can you spell it slower? E-O-S-I-N-O-P-H-I.......... Who ordered this test? And finally, do you have any questions? I did. #1: I need the final report, in hand, when I leave today to take with me to Cincinnati. #2: Annabelle has been allergic to eggs all her life and just recently tested negative to them. She's never had eggs before, so do you have a bottle of benadryl near by? This is the moment his eyes turned into quarters and he darted out of the room.

Over the next 30min, every physician and nurse was consulted and every conversation to talk us out of having the test was discussed. I repeated, "Her doctors know her allergy history, he knows she's never had eggs and he's ordered the test!" They would ask over and over, "Alright mom, what do you want to do today?" Me: "GIVE HER THE DARN EGGS! Don't you have an action plan for an emergency?!" They explained, "We only have Benadryl in our crash cart, we don't have it on hand. If something were to happen we would have to use the crash cart and call a code.." "Well Ok! That's fine. That's your plan. If she begins having a reaction, we'll just call a code. Now bring us the dang eggs so we can get started." They handed me the panic call button and everyone watched her cautiously as she ate. She did a great job and devoured them within our 10min.



Once the eggs were finished, she washed her hands and we were off for our first scan. Everything was painless, no pokes, the machine wasn't loud and nothing was truly intimidating.

 

Annabelle did such a wonderful job. The hardest part of the day was finding distractions between each hours exam. We toured the new VCU Children's Hospital (not impressed), spent some time outside, walked the halls, visited nenaw (my mom), and watched movies on my phone. The last couple hours of the 6 we were there were the hardest, but we survived. Her pain started around hour 3 after eating the eggs, they documented everything and continued the test. By the time we were finished, I could tell Annabelle was getting increasingly more weak and started scaring me. She hadn't been fed in almost 15 hours, and that is entirely too long for her body. During the chaos of the morning, I forgot to bring her feeding supplies and formula with me so I could hook her up after the last scan, so as soon as we were finished I had to leave. I signed a waiver for my mom to pickup the final report that afternoon, and Annabelle jetted home for food and a nap!

She did well that evening, but late that night she began retching (trying to vomit), Saturday did the same and by Saturday night the diarrhea began. If you ask Annabelle, she isn't pleased with the egg experience. She's quite miserable really.

Auto-Immune Skin Rash
Another curve ball Annabelle has thrown our way, are these tiny bumps that she has all over her body. It started out as one bump, on her knee, that honestly just looked like a wart.. and then it spread.. across her knee, up her legs, and is now on her chest, neck, face and eye lids. Ive shown this to our doctors in Cincinnati before (at the time it wasn't nearly as bad as it is now, bc it's spreading so quickly). The more it spread, the less I wanted to wait until we get back to Ohio, especially after seeing it was moving towards her eyes etc. I took her to the doctor and was told its an auto-immune virus, and typically never spreads this rapidly, but because she has an auto-immune disease and pretty crappy immune system in general - were left with a case of bumps spreading like wild-fire. I picked up the prescription last night, it comes in a few tiny packets, smaller than a sugar packet, and it cost $78. Yay for great healthcare (insert sarcasm). So let's hope this magic cream works, and quickly!

SO! Besides getting everything scheduled and on the books for Cincinnati, we are focusing on just keeping a close eye on how Belle is doing and praying time moves quickly so we can get her comfort soon. Besides the eggs, she's complaining of pain on a daily basis, she isn't resting well at all any more and is becoming so clingy because she doesn't want anyone to leave her. She does still run and play when she's feeling well.. so by all means, we are not at our worst, we just know that she's heading downhill and we want to move quickly.


Annabelle's a tough cookie and is looking forward to this next trip. I think she's secretly looking forward to the time alone with mommy and daddy ;) She will miss her sister dearly, but the time alone is always exciting! We plan to leave Saturday afternoon. AK is head coach for Annabelle's T-Ball team and they have their first game at 3pm Saturday. As soon as the game is over, we are hitting the road. The goal is to make it to Kentucky late Saturday night, stop for a late dinner and hotel and then hit the road Sunday morning in time for admitting to the hospital at 10am.

Let's get the prayers started now!