"So she just has a cough, right?" -NO.

This cough is getting worse.

Annabelle's appetite is depleting, she is hardly getting any rest during the night, she cannot nap during the day and she's utterly exhausted and in pain from the chronic cough. I spoke with our doctor Friday and pleaded for help. She did a lot of studying and reading on the treatment of EoE and agreed with the doctors in Boston that perhaps, our treatment plan as decided from our doctors now, is not the best treatment for Annabelle and her current state.

We decided to immediately switch her from swallowed steroids to an inhaled steroid and also add inhaled albuterol. In addition to those, we reviewed her current PPI and added Singulair Granules to her daily drug cocktail. Saturday progressed similar to the days prior. Persistent cough that became increasingly worse as the evening went on.


Finally, late Saturday night, Annabelle entered another coughing fit that led to painful retching. I couldn't run to her bedroom fast enough before I found her sprawled on her hands and knees in her bed gasping for air and retching. Madelynne followed me asking if her sissy was ok. I ordered Madelynne to run to the Tubey Closet and get a really big syringe that we use to make bubbles (60cc). She hurried off as I held Annabelle in the best position I could considering her state, and continued to calm her down between her gasps for a breath and coughing / choking. Mady came back to belles room with tear-filled eyes and a 5ml syringe. That wasn't nearly large enough - I told her I would go get one. She was shaking like a leaf and I explained, "Everything is going to be ok Mady, sissy is just having a hard time catching her breath". By the time I stepped back into Belle's bedroom, Annabelle let out a huge scream and began shaking all over her body, she then started vomiting (VOMITING) everything off her stomach and into her bed. Vomit, her last feed, stomach bile, small bits of food, and numerous streaks and traces of blood. I was absolutely terrified. Mady started yelling and pleading for an explanation for why Annabelle was throwing up. Annabelle CANNOT vomit due to her Nissen. She hasn't been able to vomit in almost a year because of her Nissen (where her stomach and esophagus are sewn together). She hasn't even managed a burp in almost a year, let alone a drop of vomit. I knew something wasn't ok. I knew she tore or opened her Nissen, but I didn't know exactly what to do. Annabelle was exhausted. Her stomach was finally relieved from all the pressure that wanted to escape and the coughing spell was finally over. She was in terrible pain, but so so tired. I cleaned her up after about 5min of laying in vomit so she could catch her breath and I wipe her tears. Mady asked me repeatedly "If we need help mommy. You should call 911. I can dial the numbers, but can you talk to them because I don't know what to say?" Bless her heart. She was scared to death. Annabelle was scared too, but more in shock than anything. I was terrified and clueless as to what we should do in the middle of the night, alone with two girls. (Daddy wasn't home that night).

Sunday progressed normal but again, as the day went on, Annabelle began to get worse again. With each cough she would wince. Her appetite was nearly gone, I just know it hurt her to eat. Her feeds were delivered extremely slow by a trickle rate, if that. No bolus or fast feeds. I spoke to our doctor multiple times again and told her that my gut just isn't allowing this to sit well. Something is telling me that she needs to be seen but I don't know what to do. More than anything, I was scared to death to enter another night when I know the nights are the worst for Annabelle. Laying down is excruciating, and I know it will be even worse now with an opened Nissen. Finally, shortly after dinner, Annabelle's cough and choking began again. Daddy was home by that time and was worried, he finally turned to me and said "we have to do something - this isn't ok". I knew what I needed to do. But everything inside me wants to protect Annabelle from what I know will happen the moment we walk into a hospital.

I told AK that I would let the doctor know that it's time we go in so she can give the hospital a heads up. And then I went upstairs to take a shower. (The things you learn to prioritize when you live in a hospital.. take a shower and pack extra clothes / yoga pants and caffeine, because you have NO IDEA the next time you'll actually be able to shower.. oh, and pee. I've learned my 18hr lesson from that one too.. when I enter a hospital with my baby, I will never, ever ever ever leave her for a SECOND no matter the need. Unless she's being taken from me for a surgery or procedure, I would never ever leave her to shower or pee. Never.)

Once I was showered and changed, I packed Annabelle's favorite things and blanket (gigi) and picked out the most comfy jammies I could find so she would stay warm. When I made it downstairs, she asked where I was going and AK told me to Shhh... I can't do that. I got down on my knees and told her, "Annabelle hunny, we are going to the hospital so the doctors can help your yucky cough. ok?" Oh, the heartbreak that tore across her face was enough to wound even the strongest of hearts. She begged and pleaded to not go. She ran to the kitchen towards the neubulizer that she FIGHTS and promised to take her medicine. "I do tweatment mommy, i pwomise, I do tweatment and make cough go away, i pwomise!!!" My heart broke and AK saw it in my eyes, he scooped Annabelle up and told her everything would be ok. Mady ran to her sissy and gave her a big hug and kiss goodbye and so did daddy before Annabelle and I headed out the door. The rainy drive to the hospital was full of 2046107636 questions from my backseat. Finally, the doctor called and we discussed mutual concerns and she confirmed she had called the hospital, that they were expecting us.


The hospital on the other hand was terribly uneventful. I explained on as high of a level as the doctor needed to hear about Belle as he stopped me multiple times , "So are you here for her cough?" No. We are here 1) We believe her nissen is torn. 2) she has an auto immune disease that doesn't allow her body to present symptoms as they should when she's sick. 3) Her appetite is depreciating so quickly that her diet is becoming dangerously unsafe based on her history. 4) Her persistent cough is progressing worse as the days go by. 5) I NEED HELP! I can't continue to do this alone at home with this child and watch her crumble and drown, something has to give, we need help.
Doctor: "So I hear and can see, she has a cough?"

:eyeroll:  Can you at least make sure the nissen isn't causing damage that needs to be addressed immediately? I gave the ER doctor my pediatricians personal cell number and asked him to call her, as she was waiting by the phone to answer any/all questions that may arise while we were in the hospital. Maybe she could explain our concerns better than me. And better yet, maybe they'll be received more respectfully than just a mother with a child 'that coughs'.

Finally, he ordered a chest x-ray. Annabelle did WONDERFUL! She's getting quite used to xrays. She kept her hands on her hips and held perfectly still. And then she faced sideways while I held her 'skirt' and she kept her hands on her head with a "Big smile for the picture" :) No tears or hesitation. She did wonderful.

The chest xray didn't show pneumonia (thank god) nor did it show significant pockets of air around her diaphragm where her nissen had torn. We consulted with the surgeon about the nissen needing to be repaired immediately and all agreed that wasn't necessary as long as she didn't have heavy internal bleeding or air pockets from the rupture. (Again, thank god).

Our pediatrician demanded an answer from labwork. The ER Doctor replied to her and explained to me, "Even if we do labs, it's still not going to change my course of action. Annabelle looks great, she just has a cough and I'm sure it's just a cold mom. Again, she looks great and healthy to me." My eyes could burst from my head. I thanked them for their time and scooped my baby up. Between every word the doctor spoke, he would have to pause and looked at Annabelle as she coughed her little head off and tried vomiting while wincing from pain. How someone can look at a child in that condition and tell me she looks great, is beyond me.

In the hospital's defense. They cannot do any medical procedures or tests on pediatrics as they do not have a peds unit. If they were to need to do anything beyond 'stabilizing her', they would Med-Transport her to another hospital where they could better conduct those tests. Im guessing that's why they were so reluctant to help in any sort of way.

When I spoke with our doctor after leaving, she couldn't believe that someone had the nerve to say 'she looks great'. We understand Annabelle is quite a mystery and doctors just simply don't know where to start when it comes to helping her, but for the love of Pete. Annabelle still deserves some mercy and help when she's struggling right in front of you. And yes, she has weight on her - purely bc she's terribly malnourished and has been on prednisone twice daily for 6 months. Ya darn right she's going to be chunky!" that doesn't mean she 'looks great' though. 

The next morning we took Annabelle to see our doctor and perform labwork. What do you know, with zero fevers and absolutely no pain or complaining, Annabelle has fluid in her ear and an ear infection. Which I am certain contributed to the upper respiratory infection that she's fighting and the ER never caught. Thank God for pediatricians that know, love and advocate for this child better than over-paid doctors do.

After multiple conversations with doctors, completion of 6 trips to CVS in less than a week, another appointment from the Home Health Staffing company and lots and lots and lots of kisses, bedtime stories and episodes of "Peppa Pig", Annabelle is feeling ok. She is quite groggy, irritable and the cough isn't getting better yet but hopefully it will soon now that she's on antiobiotics. I am waiting to hear from our surgeon as to how they want to proceed when it comes to the Nissen repair. A nissen is a major surgery and a terribly painful, several-day impatient stay for Annabelle. I am not looking forward to it, but I would prefer something to be addressed sooner vs later, as Annabelle is drowning each and every time she lays down or eats/drinks to quickly. Something needs to give soon, very very soon.