Sunday night was so very long. Every hour, the nurse would enter our room with her supplies and we would work together to get ready before rolling Annabelle over and telling her what we are doing. She would wake suddenly, wide eyed and question everything "Why mommy?! What? What are you doing to me? Mommy no, no mommy no more, please mommy, please we go to the hotel!" I would hold her down and the process would begin all over again. She would scream and I would whisper "I am so sorry baby, I am sooo sorry :( " Eventually it was all over and I would clean her up as she fell back asleep from sheer exhaustion. An hour later we did it all over again.
Finally, after an emergency text demanding coffee, daddy and Mady showed up. Belle was tired and defeated but her sissy provided the perfect distraction. We replayed Frozen for the 15th time and Child Life brought crafts to pass the time. Around noon, daddy wanted to spend some time with Annabelle (and mommy needed a break) so he took Belle to the playroom while Madelynne and I had lunch in the cafe. Before we knew it, transportation was at our door and ready to take us to Pre-op.
The girls rode together and had a great time. They waved at everyone in the halls like pagent princesses and Belle forgot she was headed to the OR. Once we were in the surgical waiting area, she began to get upset again. She cried and asked so many questions. I couldn't answer them well enough for her... not to mention, everyone walking around us were in scrubs, headgear, face masks etc. They were intimidating as hell to a 4yo that doesn't trust a hospital. They began hooking her up to monitors and she exhaled, turned over and barely spoke another word. She didn't have much she wanted to say. You could tell she wanted to have fun and be cheery because that's just Annabelle's personality, but every time she would pipe up about something fun, she would drop her head because she knew she was about to loose a battle.
Dr. Putnam came by to see Belle, he gave everyone a high five and was so kind, soft spoken and sweet as always. He told Annabelle that she would be just fine and no ouchies. She clearly didn't believe him. I asked Dr. Putnam if he would change Annabelle's tube for me, it was nearing time for it to be changed and since she would be under anesthesia anyway, it would sure be nice to save Annabelle from some pain of having to do it while she's awake and at home. He agreed but refused to use our tube, he said he would use one that they have in stock so we can keep our own supplies. He understands the struggle of needing to keep a stock of your own supplies bc insurance could care less if you get as much of what you need or not. Dr. Putnam was optimistic that things would look good but very cautious bc like the rest of us, we don't expect them to. Annabelle complains of pain too often to look well under a scope.
Finally, the anesthesia team came to visit. They brought the good stuff with them, Versed. After I signed the rest of the paperwork, they delivered the versed and Annabelle immediately was drowsy. It didn't take long at all for her to fall back onto the bed and drift away. I could tell in her little eyes that she was panicking and confused, but soon enough she was comfortable and smiling thru a drunk giggly smile :)
We walked all the way to Annabelle's OR room where the team stopped us at the door and daddy and Mady gave her kisses and made their way to the waiting room. I stayed with Annabelle until she was completely under. Dr. Putnam was standing in the room, when Annabelle caught eye of him, he did a dance for her and she mustered half a grin. The OR was less intimidating here in Cincinnati than others I've seen Annabelle wheeled to in Richmond. The team was spread out around her and awaiting go time. Once they were ready to put the gas mask over her face, the anesthesiologist told me to give her a kiss but instructed "Tell her you love her momma and you'll see her later; we don't ever say goodbye in this room". It was nice to hear the words of encouragement and promise during a time every parent fears. Anesthesia is one of my biggest fears and my baby has been under anesthesia TWENTY TWO times. It never ever gets easier. Ever.
Once Annabelle was under I joined Mady and AK in the waiting room where we impatiently watched the screen with Annabelle's number. The surgery took twice as long as it did last time. Every single minute past what we expected, our hearts sank deeper. I kept asking AK "Whats going on? Why is it taking so long? What do you think they see? Is she ok?" I know he didn't have any of the answers and I know his heart was just as heavy. This was probably one of the only moments so far that I regretted having Madelynne with us. I wanted to break down but couldn't, I feared the doctor would be giving us bad news and I would have to process that and handle the news in front of Madelynne and I couldn't figure out how I would be able to pull it off. Mady beside us, forced us to stay strong, when sometimes, I don't WANT to be strong.
Fortunately, they finally called our name "Family for Annabelle Bishop". I jumped to attention and raced to the holding room where we consult with the doctor.
Annabelle, to all our surprise, still looks good! Visually, she looks great on the inside, she doesn't appear to have furrows, rings, plaques, ulcers etc along her GI system. Now, the biopsy's may say something different but we aren't accepting any news beside the best!! Her gtube on the other hand, was on the verge of falling out. Apparently the balloon on the inside of her stomach had broken and the tube itself was dangling and just holding on by sheer luck. Thank goodness we were scoping when we did!
Annabelle recovered very easily. She didn't come out of anesthesia hysterical like she typically does. I think the versed helped a lot with the recovery side as well. She was asleep when I met her in post-op and didn't wake up until we were back in our room with daddy and mady. We were discharged about an hour later and headed straight to the hotel, for everyone, to, sleep!!!! She slept like a rock all night.
DAY 3: Allergy and Immunology
Our plans for this trip are to receive only good news and add new foods to Annabelle's diet. I took a gamble a few weeks ago and predicted that we would pass this scope and be able to add new foods for Annabelle so I made sure to find a great allergist that works with Dr. Putnam. Keep in mind a few things, Allergies and an Eosinophilic Disease are two COMPLETELY different things. Annabelle's allergies have nothing to do with her EGID (Eosinophilic Gastrointestinal Disease) even though the EGID treats foods, airborns, stress etc like an allergic reaction and rapidly responds similar to the way we understand an allergic reaction to respond.
The reason we do test for allergies is that if we want to add food to Annabelle's diet, it doesn't make good sense to add something like peanuts ( we would never do that anyway ), if Belle has a nut allergy. Make sense? At the same time, kids with EGID typically do have food allergies and those allergies can change back and forth and therefore CAN have an impact to Annabelle and her scope results.
Testing works two ways:
1) We can test for all the foods she is eating right now. If the biopsys come back clean, that will not explain what Annabelle's pain is coming from. If her biopsys come back positive and active for EoE, it *could* be from a food that she is terrible allergic to. Therefore, we test all the foods Annabelle is currently eating to see if she is allergic to anything already in her diet to explain a) pain or b) failed scope.
2) We test for all the foods we would LIKE to see in Annabelle's diet. If the biopsys come back clean and the decision is to allow Annabelle to have a new food, we will have a list of safe things she can eat and potentially trial.
Between the foods she is currently eating, the common ingredients we would like to cook with (vanilla, nutmeg, cinnamon, salt, pepper, olive, etc) and also seasonal allergies, we tested Annabelle yesterday for 61 things. SIXTY-ONE! :(
She was nervous the entire morning. We got to the hospital (Liberty campus, about 45min away from the main hospital / our hotel). Annabelle wasn't feeling well, her tummy was hurting pretty bad and she didn't want to walk. I don't know if it was because she was too weak, hurting or depressed but she wanted daddy to carry her everywhere. Once we got into the room, daddy made both girls laugh and distracted them the best he could while I talked with the doctor about Annabelle's history. When Belle was a baby, she would typically show positive for nearly every single thing they tested her for. The older she gets, the less she shows positive for an allergy to. The last time we tested her was in Boston Children's Hospital a year ago and the only thing she showed positive was beef. Although we didn't test for much then either.
Before we knew it, it was time to begin. It was awful, that's all that needs to be said. I know it isn't the most painful procedure, I know that. But after everything Annabelle has been thru, as many times she's been forced to 'hold still' while doctors do painful things to her, this was just enough to break my heart. I held her still for 61 sticks across her back while she screamed my name the entire time. I couldn't hold it back anymore, I tried my hardest to be strong but the tears were too heavy. Annabelle and I locked eyes for the several minutes it took for the SLOOWWWWWWWWWW nurse to finally finish counting and sticking, and counting, and slowly sticking, and recounting and losing track, and sticking again. We watched each other as both our tears poured off our faces. There just weren't good words anymore. I had nothing. I could see Mady from the corner of my eye and she stood with daddy on the other side of the room. Neither of them typically have to witness this side of Annabelle, it's usually only me, but today they got to see just how hard these procedures can be on someone so little and broken. Yes "Be strong Annabelle, be brave, you're tough" - all good words and advice, but I am pretty sure in her little mind she was saying the same thing I was "Screw this - i dont want to be frickin strong or brave, I DONT WANT TO BE HURT ANYMORE!"
When it was all over, Annabelle tested negative for everything we tested. That's a great sign! It surely doesn't mean that any of the things we tested are safe from an EoE stand point but it does mean we don't have to carry an Epi-Pen with us any longer and we don't have to worry about an allergic reaction (to foods at least).
Once the doctor gave us our paperwork, Annabelle piped up and marched out the door and made a B-line for the exit. There was no stopping her and Madelynne was determined to show her the way. I think both girls were eager to get the heck out of that place! We spent 3 hours in the allergist office, that was enough for one day.
We left to get lunch, Annabelle wouldn't eat anything (she hasn't eaten much since Saturday). Daddy spotted Cabelas and since we don't have one in Richmond, we all decided we needed to take a tour :) The girls found themselves in awe at the fish tank. What did daddy buy? An orange hat for Mady for when they go hunting.
The afternoon was spent browsing and wandering around town. We took this opportunity to distract the girls from everything they had been thru the last couple days. We tried our hardest to have fun and plan to do the same today.
I am cancelling our tour to the hospitals Eosinophilic Research Center where they would educate us some more of EoE and allow us to tour the labs. As much as I want to go (BADLYYY!!!!!), I just don't think Annabelle can take another day walking thru the threshold of the hospital doors again. We have appointments Thursday and several appointments Friday. The girls need a break. I am not as strong as I thought I would be during this trip. I am coming unraveled. AK is trying to keep everyone together. Mady is too young to have to be as mature as she's being and poor Annabelle cannot eat and can hardly walk. We all need a break. I think today, we're going to the aquarium and movies. That should be enough to put our family back on track.
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