I called our Pulmonologist immediately and left a very…passionately spoken message for him or his nurses.
Each minute I spent waiting for that phone call seemed to stretch into hours. In all actuality I got a call rather quickly from a flabbergasted nurse that apologized profusely and got the paperwork faxed to GI within the hour.
A theme you’ll see often on this journey is the lack of organization with paper work.
I loathe paper work.
I called Radiology every day after I knew the Pulmonologist submitted the paper work to see if they’d received the necessary order. It took a few more days for insurance approval to go through and the order (more paperwork) to be submitted.
Once everybody was on the same page we got her upper endoscopy scheduled for her the first week of November. All five of us piled in our car before dawn and headed two hours away for the procedure. It’s always been difficult for me to handle three children’s appetites when one is not supposed to eat.
I try to get the boys up earlier than Maya so that they can eat and she won’t be miserable. We went as a family so that we could all support Maya and because my husband knew I needed him there for the waiting.
The waiting is the most difficult part.
Maya and the boys behaved beautifully as always and everything went smoothly, thank the Lord. After the procedure the attendant called me into a cold and tiny conference room to wait to speak with the surgeon.
I waited with relief that Maya would be waking up soon but I was very anxious to hear what the surgeon had to say.
As soon as she got to the door I knew that we had a very long road ahead of us.
She came in with the pictures of the inside of Maya’s esophagus, stomach, and duodenum and sad eyes. She sat down, took a deep breath, and showed me the furrowing along the esophagus, the swelling, the red, patchy, bleeding spots in Maya’s stomach, in short, the undoubtable evidence of Eosinophilic Esophagitus.
She told me that she suspected we were in fact dealing with EoE and graciously explained the first line of treatment. We discussed how long it would take for the biopsies to come back from pathology and when I could expect to hear them. She gave me a copy of the pictures she had taken and left for her next procedure.
The mixture of emotions she left me with I’m not sure I can quite explain. We were so very close to a diagnosis that had been a long time coming. I was incredibly sad that I was more than likely right. We were on the cusp of answers we so desperately needed.
As I walked back to my husband and boys in the surgery waiting room I was swept away by someone telling me that Maya was waking up and it was time to see her.
As soon as we made it into the PACU (post anesthesia care unit) I had my eyes and ears peeled looking for my daughter. I found her before the attendant found the correct number.
The PACU is a strange place.
It’s a place of relief because it means your little one is all done with their procedure.
It’s full of beeping from machines that monitor blood pressure, heart-rate, and oxygen levels. Every kiddo has at least three lines coming from them. While the place if full of people, the only people who seem to matter are your kiddo and the RN that’s watching over them on a stool right beside the bed.
You’re surrounded by children coming out of anesthesia which is interesting. Most kiddos aren’t quite themselves and experience a wild series of emotions before coming back to their own self.
As we waited for what felt like forever for Maya’s discharge I made sure she had plenty of water and juice to sip to help the discomfort of having the endoscopy tube down her throat.
As soon as she was thoroughly awake and we received our discharge orders we hightailed it out of the hospital and began the wait for the biopsy results…