EoE - Endoscopy Round 3

Annabelle must have known there was a big day ahead. She woke around 2am and spent the rest of the night crying, begging for juice / water, uncomfortable and overall miserable. I have no clue what’s been bothering her so much at night, but it’s sure making for a sleepy family during the days.

At 2am we cut off all her feeds, and began the marathon of crying until 530a when we all surrendered, I asked AK to bring Annabelle into the bed with me and I snuggled her while he started packing all the bags. Mady asked where Annabelle was going as we were getting out the door and I explained “She’s going to the hospital again today sweety, the doctor is going to put a camera in her tummy and check to see if there are anymore boo-boo’s or if they’re all gone! We hope they're all gone, huh?” Annabelle overheard the conversation and was less than pleased to hear where she was going. I was taken back so quickly when I realized Annabelle understood what my words actually meant. This is a turn in the road for us. Explaining to Annabelle what is going on vs. shuttling her to doctors / procedures. I haven’t looked forward to this point and truly don’t know that I am ready. It's been coming and we've been more vocal to Belle more lately than ever, but it's still hard. It’s hard to explain to a 2yo what is happening when all this is so far above MY head! We keep it simple, very simple, and let Annabelle lead the questions as we provide high level answers, without lying to her. 

So far it's working, but more recently she's begun to ask questions that I can't lie to. Maybe I should? But that's not how we parent in this house. No surprises or sugar-coating the facts. 

"Mommy. No shots! Please!" That's the first thing that my child pleads out of her mouth when she learns we're going to the hospital. I tell her the doctors want to look inside her tummy to check for boo-boos. She agrees. She knows there are boo-boos inside her tummy. She knows food is what hurts her and she knows that she cannot run too much or play too hard or she will make herself sick/hurt. She accepts and is beginning to own all these things as part of her life. She is only two though, and while her vocabulary has just begun, both my children have been forced to grow up well beyond their years, entirely too quickly. The conversations I can have with these girls, I could have never imagined I would be able to have with toddlers.. but we do, because this is our life.. and understanding our lives and the odd ways things evolve around us, brings peace when peace and comfort is hard to find. 

So our days adventure began with just that. Curiosity and questions as to what we are doing at the hospital that day. A disappointment when we didn't exactly want what was about to happen. The car ride was long. She was ticked. She wasn't on board with going to visit the doctors. She definitely didn't want any boo-boos, and most importantly, she wanted her juice! She's fed nearly around the clock.. So the discomfort of an actual empty stomach was probably very new to Annabelle.. She begged to eat and have her sippy cup.. I begged for us to arrive at the hospital faster! (My favorite strategy = distractions! Lol)

While I checked in, AK and Annabelle played games looking out the window. We were the first patients of the morning and things were quiet and slow.. I appreciated that. After all, the girls series of questions prevented me from having my cup of coffee before we left the house.. quiet and slow is just the morning we needed ;)

Finally it was time to head to the back. Sweet Annabelle stiffened and nearly jumped in my arms, "hold me mommy, me carry you". 

AK collected our things as I followed the nurse back and we began our hour of pre-op questions, medical history and consults with the anesthesia team that would be with Belle in the back and keeping her sedated for the procedure. 

The anesthesiologist asked if we had ever used a drug to 'relax' belle before she is taken to the back before. We haven't. It's never been mentioned or offered, but she also hasn't ever fought terribly when the doctors take her out of my arms to head towards the OR. All I could think that morning though, we're the questions my girls kept asking me.. "Where is Annabelle going? What are they going to do? Is she ok? NO SHOTS MOMMY!" I looked down at Annabelle who was curled over my chest like a baby monkey and my heart sank. The last thing I want for her is to be scared! I agreed to the loupie drugs and am happy I did. While it made her absolutely drunk, it also made her quite unaware of what was going on but still happy. 

When it was time to take her to the back, the nurse asked if I would like to accompany Annabelle until she's fully sedated. I don't know why, but for a moment I was hesitant.. I agreed of course but I was nervous. For the both of us. I didn't want to see anything I don't like and cannot control. At the same time, I do want to be with my baby every single step of the way, whether I like what's happening or not. And worst case scenario, if something makes her worry or become scared... Then I would be right beside her until she's asleep.

It took several minutes until everyone was ready to put her under. When that time came, she did fight the gas and a sheet of panic covered her face. I quickly leaned over and sang her name until her disoriented eyes finally reached mine. I smiled and told her she was ok, I told her to have sweet dreams and I am right there. She closed her eyes and I was quickly ushered out the room. 

Again, my favorite strategy to bad situations = distractions. My favorite thing in the world = Food. We went downstairs to meet my mom for a quick breakfast sandwich and back upstairs to wait. The procedure was a little over an hour until they called me. The sweet nurse knew just what I wanted to know the moment she saw my face. Without having to say a word she said to me "yes, she is crying for you mom. She's pretty upset, follow me" my long legs moved three x as fast as hers did thru those double doors to recovery! I found my baby absolutely terrified and wobbly beyond belief. Most the time she is just very ticked but sleepy and disoriented after sedation.. This time, she was furious! I can't say she was in as much pain as I've seen her before, she was just really mad. Anesthesia will do that though, so I hear. It took the entire time in recovery to calm her down. Mostly she just wanted the IV taken out of her hand. She was determined to have it removed. "Take this off! Take it off mommy! Off! No tape, take it OFF!"

Finally, the steps of high heels that I had been waiting to hear.. She was on her way to consult with us about the procedure. I held Annabelle tight and kissed her forehead. Our doctor joined the room with a face of disappointment. She didn't waste a moment to tell me what I didn't want to hear "Mom, she is covered with signs that the Eosinophilic Esophaghitis has relapsed. It's spread from the entire length of her esophagus. She has thick patches of plaque, longitudinal furrows and rings to indicate we're in an EoE outbreak. Now tell me again.. What is in her diet?!" I mumbled and silently told myself to make myself speak, answer the questions because the doctor doesn't have long. I told her everything we were eating and she decided to immediately remove the wheat, bread, pasta. I asked if we should return to our EoE Action Plan that our doctors have already worked to develop and she declined. She explained that from the looks of her esophagus, she doesn't want us doing anything at all until she speaks with the allergist and consults with our doctors at CHKD. 

The biopsys should be in by next week. Those will provide more insight as to just how bad Annabelle is from an Eosinophil count. A normal esophagus has zero eosinophils. When Annabelle was diagnosed, she had over 40 in the bottom part of her esophagus, 25 in the middle and 15 in the top. I have absolutely no clue what the count will be after this scope. We are praying with everything it's low and the damage already done is minimal. 

We drove home in sheer silence. AK mumbled, "Im sorry we're having such a bad couple days.. Im sorry about this morning, Annabelle will be ok, we'll get thru this too". I was speechless and angry. Annabelle was exhausted and upset. Emotionally she was upset during the car ride home, she kept begging for me to hold her. I held her hand until she fell asleep (and so did my arm) and when we got home, we all crawled in the bed and wrapped her up with more love than you can imagine. She watched Mickey Mouse and slept for the rest of the day. 

In the meantime we wait. Waiting is the absolutely worst thing in the world. I hate to wait. The biopsy's will come in and then the rest of the team will be consulted to determine an action plan for treatment, how to calm down this EoE flare, how to treat the damage and last but not least, we will begin working to see just which foods can stay or if we will be losing all food all together again. My prayers are being generated in a thousand different directions. But my gratitude to all your prayers are endless.