The Perfect Compromise

Dare I say it? We had a great appointment this week. They did not share great news with us. Annabelle is still actively battling a relapse of EoE. Our trial for wheat and chicken was failed. But, we met with a team of knowledgeable doctors and talked as adults and caregivers of a child, a person - we decided the best game plan for Annabelle – together. Finding the blessing in a painful situation, we consider a win.

Annabelle did wonderful for the appointment. We waited nearly two hours before a doctor came to speak with us. The afternoon was long, everyone was cranky and hungry (and nervous), but we all made it out with no tears. When the doctor came in our room, Annabelle immediately asked if he was going to poke her. I promised there would be no pokes (needles) today. Once that was clear, she was relaxed and chatty. She showed the doctor her tubey, took a deep breath and explained that she was 3 AND A HALF and her sissy was 5 AND A HALF (This is quite a thing.. the ½ ages that is.)

Of course the conversation began with my pregnancy, leading to her first signs of FTT, then diagnosis and all the issues in between. Once we landed at current-day, we engaged the other two doctors in the room. Both the GI and Immunology doctor shared their expertise with us on the management of Eosinophilic Esophaghitis and we asked multiple questions. Their primary focus was to distinguish the cause of relapse and to clear her GI system of Eosinophils before they do more damage than they’ve already done. My primary focus was two-sided, I wanted to fight to keep her foods and I wanted to fight against more drugs.

Finally came the truest question. The doctor sat down in a chair and looked dead at AK and I both. He closed his notebook and folded his hands in his lap; “What do you want for Annabelle. What do YOU want to do as her parents?” Obviously he cannot give us a true diagnosis for our baby. He cannot make this unfair life sentence of hers go away. He cannot rid her small body of an uncontrolled auto-immune disease. But he had the compassion to ask us, what is it that we prioritize the most in our parenting of this little girl. We cannot have it all, but if we had to choose one thing that we wish for, what would it be.

We looked at one another and didn’t really know how to respond. I swallowed back all the emotions going thru my head. I exhaled deeply over every single flash back that ran thru my memory: tears, Annabelle tears, begging for help, NG tube changes, bandage changes, burning granulation tissue off her stomach, handing her over to surgeons, pacing waiting rooms, brain scans, emergency room frustrations, mady asking me if her baby sister was going to die and go to heaven, myself sitting in church with tears pouring off my face countless Sunday’s, my pleas, medical bills, seizures, swollen eyes from a confused baby crying hours on end, EEG, baby straight jackets, home covered in medical supply, feeding schedules, pharmacy trips, IVs, more surgeries, unknown fears, AKs tears, pacing our home for hours on end, faking the smiles, lying about the worst, living bitter, missing milestones, traveling hours for hospitals, floods of abnormal labs … … … and then I looked down at my daughter. She’s sitting next to me snacking on strawberries and watching a movie. She's happy.

Quality of Life

If there is nothing else in this world we want for our daughter, it’s the best quality of life. We have spent years trying to heal her body, find answers and performing medical treatments that doctors have promised would give her the best help in the long run. All the while, we’ve stripped her from her own quality of life. We’ve subjected her to more painful tests and procedures, we’ve forgotten to allow her to be a toddler. I don’t even remember her first steps or first words because I spent all my time researching, paying bills and driving her to another hospital. Our daughter has sat at a table and watched everyone in the world eat meals without her. She’s isolated from everything she enjoys at the expense of this disease. We want the best quality of life we can provide, safely. 

In the past 6 weeks, Annabelle has grown. She has absolutely EXPLODED in personality and strength. Not to mention, her bone structure has grown in height, she’s gained almost 4 pounds (4 POUNDS!!!!!!), her hair is growing for the first time and she’s resting. She’s laughing. She’s sleeping at night, napping during the day. She can run around the house without collapsing. She can probably join us for a walk around the neighborhood for the first time in her life. Before December, she couldn’t walk 4 houses to the end of our street without tiring. Annabelle’s color and skin looks and feels healthy. She’s eating and content. Our instincts are telling us that he credit goes to the foods now in her diet. Annabelle’s never had protein in her life, she’s never had wheat before now. The combination of those two foods plus the fruits and veggies she can eat – she is thriving better than I ever could have prayed she would. This is the quality of life we wish for our daughter. That is the ‘normalcy’ we want to retain.

The doctors agreed with us whole-heartedly. They explained that while we do not know what is happening to Annabelle’s little body on the inside, we don’t know exactly what her true diagnosis is, but making her time here as comfortable and normal is possible should continue to remain our top priority as we move on in her care. He agreed to work with us to decide what that would be and as a group, we all decided Annabelle’s treatment plan.

For the next 90 days. Annabelle will continue to eat chicken, wheat, fruits, veggies and coconut milk. We cannot lower her around the clock tube feedings of Elecare, but we are not removing any foods from her diet either. (Nor are we adding any of course). We will unfortunately, be adding more drugs back into her diet. She will go back on steroids, now twice x day, remain on singulair granules, omeprazole and mineral oil. This wasn’t a terrible compromise. I hate that we are back on steroids. For so many reasons, I HATE steroids. Their long term affects are terrifying, not to mention the immediate side effects (hello crazy roid-rage baby again) but it’s a compromise. We get to keep foods that we know are nourishing her body.

In three months we will perform another endoscopy and round of biopsys to determine if the medication is working as intended. If it hasn’t cleared the active eosinophils within 90days, Annabelle will have to come off foods and back to 100% tube feedings with drugs. Our prayers are for the meds doing what they’re made to do and us to have clear biopsys’s in a few months. In the meantime, we continue to fight for answers!

As the appointment wrapped up, I asked the doctors, in their experience, what was the possibility of ever coming off Elecare and tube feedings. The answer was grim, vague and he told me not to focus down that road at all. Many people will never come off those feedings and we are nowhere close to having those conversations. My gut told me the same answer, but I wanted to hear an expert opinion. We asked the doctors many questions around Eosinophilic Esophaghitis and it’s relation to children with other diagnosis – his answer was again, vague and grim. Their best advice was to continue the road we are on. Do NOT stop fighting for an answer for Belle, she desperately needs a diagnosis before more is damaged beyond our control, but to keep her quality of life in perspective and never lose focus. We are not promised tomorrow, make the best of every single day we’re given – fight but remember to laugh and breathe.

We left the hospital late that night, around 630pm with labwork to complete. Our minds were racing but our hearts were content. Annabelle was happy and in a great mood. I never explained to her what happened or why we were there. I never threatened her with the potential to not be able to eat bread and chicken anymore so she didn’t have that overlying fear about the appointment. We simply went home and enjoyed dinner as usual. 

Madelynne was very curious as to why we were at the hospital so late at night. She wanted to know if the boo-boo’s were still in her sissy’s tummy and I told her yes. She wanted to know if she would have to stop eating all food again and we explained to her that mommy and daddy talked to the doctors about that. We explained that, “we told them just how much Annabelle loves to eat her chicken and dinner with the family, how much Annabelle is growing and how happy she is now. They told us that she can keep eating if she starts to take a new medicine. The medicine will make her a little more cranky and upset at times, but it will help the boo-boo’s. You’ll help her when she gets frustrated, right?”

Madelynne understood very well and Annabelle was clueless to our conversation. The night was wrapped up quickly as everyone headed to bed. I called our doctor and talked to her for a long time over what happened that day, we were both pleased and discussed our game plans together. The night was late and AK and I were exhausted.

We said our prayers, onward to a new day. 

Exhale. 

Finally, a battle won.