It's taken me a week to update. That is partially because we have been so busy, my head is spinning; and also because I am just too heartbroken to write in words what the last week has done to our lives. Let's recap. Shall we? Hang on tight, it's been an adventure.
Monday, March 25th
We arrived at the hospital at 7:15am, 15min late but in our defense the roads were COVERED in snow. We drove extra cautiously to the hospital with both kiddos in tow. The kind nurse checked us in and right away & we were taken us back to pre-op. I sat down in a chair and held Annabelle in my lap. We undressed her down to her onesie and put a cute baby gown over her. You could tell she knew something was going on, she was incredibly cautious and in-tuned to everything going on around her. Several nurses met with us, explaining the procedure. Dr. Villalona came by to say good morning and explain what would be going on. The anesthesiologist checked in and we determined that due to Annabelle's soy allergy, she cannot receive IV anesthesia, so they would have to use gas to put her under, do the scope, come back up, gas, scope etc. The nurse finally came and picked her up and took her from us and walked down the hall. Mady was a welcomed distraction and I took her by the hand and we made our way back to the waiting room.
I used that time to feed Mady breakfast. The diaper bag was packed with a buffet: banana's, applesauce, zucchini bread, apple, OJ, Milk etc. I played on my phone browsing anything to keep me distracted. I fixed Annabelle a sippy cup, warm, to have ready when she was finished. FINALLY! 45min later she was done and we were told we could go see her.
The sight of my sad, terrified baby was nothing less than heartbreaking. She was laid on her side, SCREAMING harder than you can believe. She couldn't lift her arms or open her eyes but she was hysterical. The nurse asked if I would like to hold her and I begged yes. She lifted poor Annabelle and all her cords/wires, and they moved her bed and replaced with a chair for me to sit. She hardly had ANY control of her limbs/head, she still couldn't open her eyes but eventually she heard my voice and calmed down. I wanted to cry SO hard, and had Mady not been right beside me, equally terrified, I would have. Mady was so tender and sweet, she held Annabelle's little foot and sang her song:
Baby Annabelle, of mine
Everything about you is perfectly fine
I love what you are
and I love what you do
Baby Annabelle,
I love you
Dr. V: I think that's going to be it.
Me: Really? Ok, so you could tell just during the scope?
Dr. V: Yes, absolutely. I couldn't see much going in but towards the end there was plenty indicators for the disease.
Me: Ok, wow. I really shouldn't be surprised, I mean, the more I read, the more she looked to fit the bill for Celiac's. So should we just start avoiding gluten?
Dr. V: No... no I am sorry Ashley, I believe she has EoE, Eosinpholic Esophagitis.
Me: What?! No... no , really? Are you sure?
Dr. V: Well, let me show you what I saw.
Dr. Villalona then showed me the pictures he took during her scope. The top of her esophagus truly didn't look too terrible (not to my uneducated eyes at least), but towards the end, something looked very, very wrong. Terrible in fact. He told us he would be contacting Dr. George (our allergist) and let her know what he has seen and we should get the biopsy results on Thursday.
That evening I wanted to go to Target. I stopped at Starbucks and walked around the store for an hour and a half, silent, no phone, just walking and thinking. I went to bed praying.
Tuesday, March 26th
Annabelle was at Kelly's and so tired. She wasn't herself, reasonably so. Kelly kept me updated really well all day but with each text it broke my heart. She said "We rode all the way to Louie's school and back and she didn't take her shoes or socks off. We know she isn't feeling well!" - See, Annabelle doesn't believe in shoes and socks in the car, it's like her personal mission to have them off immediately as soon as you shut her door :)
Around 3:15pm Kelly called me, "Louie has a temperature and a kid in his class has strep. Im running him to the doctor now and will let you know what they say in case you need to find out what to do if Annabelle's been exposed to strep after having her poor throat biopsy'd!" Fortunately he tested negative for Strep and I showed up early to get Annabelle and went home. All day she only drank a cup and a half of formula. A slice of lunch meat and a couple grapes. My throat would be sore too!
Wednesday, March 27th
Sheila came over to watch Annabelle so I could keep her from Kelly's. Of course when I got home the house was a mess but nonetheless Annabelle was safe and away from what was keeping poor Louie sick, but her cough sounded terrible. She only drank two cups of formula and wouldn't eat all day. I tried for dinner to get her to eat and she just wouldn't, I can't force a baby to put food in her mouth so I gave up. We all went upstairs and took baths, I squeezed Annabelle extra tight after laying her down and went back downstairs. I spent most my evening browsing online. Laid in bed early and zoned out trying to watch TV. AK and I watched The Following until midnight and I swore I wasn't going to be able to sleep. I am pretty sure I fell asleep DURING my prayers asking God to please give us good news tomorrow. I prayed the doctor was wrong in what he was seeing, I prayed for a blessing for my little girl that deserves a break.
We skyped with the Lloyds and chatted for a while. It's so nice seeing our friends on a regular basis, via internet or not, it's so nice having that support system. They've been a bigger support than our entire family and then some. They are praying dearly for us, and to be honest, they're a lot more in touch with the big man upstairs than we have been lately, so hopefully he hears their prayers sooner than ours!
Thursday, March 28th - Our Lives Changed
I dropped Annabelle off and talked briefly with Kelly about what the tests may say. I was clueless and couldn't concentrate on our conversation to save my life, but I welcomed the distraction. I gave Annabelle several kisses while she sat in her highchair and said goodbye. Pulling out the subdivision I started to pray. The further I drove, my stomach began to sink. I just knew today would bring me news. By the time I sleep tonight, I will be upset to not have answers, or upset to have a diagnosis I didn't want. There were so many unknowns and it made me literally sick. I crossed the funky railroad track and my bluetooth cut in and interrupted Elliot in the Morning. The screen read: GI Specialist. The time was 7:35am
Me: Yes, yes now is fine! Good morning to you.
Dr. V: You probably want to grab a pen and paper, I have a couple things to tell you.
I was speechless, I knew by the start of this conversation, it wasn't going to be one that I could have while driving down the road and I found the nearest turn off to park. Grabbed a folded piece of paper and knocked everything out my glove compartment to locate a pen.
Me: Go ahead, Im listening.
Dr. V: She definitely has EE, I am so sorry.
He explained to me how they measure and what numbers mean on the biopsy. He explained again what he was seeing, rings, furrows, scarring etc.
Dr. V: We want to see a reading of zero. 5 is a positive and 15 is a definite confirmation we have a problem. At the lower end of Annabelle's esophagus, she was showing numbers in the upper 40s. The middle was above 25 and the upper was over 15. Here's how we treat this, we remove most the top allergens and switch to an elemental formula.
Me: But, we're already doing that. Those top 8 trigger foods aren't even in her diet! She's already on formula and has been.
Dr. V: I know, I am equally baffled. I am going to call Dr. George as soon as I get off the phone with you and we will discuss a game plan. Annabelle also has a great deal of gastritis in her tummy that was visibly irritated, once this disease is under control and the gastritis is healed, she will, for the first time, feel good. She won't be in any pain. You've done well Ashley, you have a diagnosis although it isn't what any of us wanted to hear. But we know what we need to do to help her. We will get there, it will be a long road but your baby will be happy and pain free very soon.
I thanked him very much, asked a couple random questions including the terrible coughing, he said that most often kids with this disease have asthma, and he will mention it to Dr. George. Once I hung up I called AK right away. No answer. I called Kelly. No answer. I called Kristy - beneath a whisper that tells me she was laying in the bed with her sweet baby's, she finagles her way out of her bedroom to talk to me. I explained to her what the doctor just said. I was very matter-of-fact about it all. I think I was in shock. I didn't have a studder in my voice and just read off the facts. I was almost to work and pulled in the parking lot when it occurred to me, "My baby may never have a birthday cake" "My baby will have this disease and will NEVER be normal for the rest of her life, she will always be fighting to stay in remission. She may never eat food again!" At that time I broke down.. only half way. I was sitting in my car in the parking lot and couldn't look like a mess walking inside. I couldn't allow myself to get upset yet. Then AK called back, I explained to him the results as he was walking Mady inside the school. He was pretty quiet, I don't think he really thought she would have the disease so the news seemed like a surprise Our conversation was less than 30 seconds. Which was helpful because again, I needed to keep myself pulled together!
As the day went on I moved about in a trance. I didn't rush to update people, I did respond to those that texted me. I called mom and she needed to call me back, which took place several hours later and she seemed unphased. I talked to Kristy a lot during the day. We discussed back and forth the research and information we had found online. We reassured each other constantly that everything is going to be alright. Annabelle is strong and no matter what, she will be feeling better and for that will be grateful. Food or not. I had a meeting at 1p and did my best to concentrate, finally I told him "can we reschedule, I am worthless today, I think we covered enough information already. Let me work on this and get back to you next Thursday?" I scheduled us for the following week and he left. Just then the allergist called me back and asked that I come in that afternoon at 4:30pm to discuss the diagnosis, our game plan, what this all means, get started on meds etc.
Today was Grandparents day at Madys school so Sheila had Madelynne with her. I called Sheila on my way to pickup Annabelle and told her, "The allergist wants to meet with AK and I at 4:30p, would you mind hanging out with Mady until we are finished at the doctors. We are discussing xyz and it's right beside AKs work, he will be meeting me there."
Sheila: Well I am going to bingo tonight, as long as AK is home before 5p that's fine.
What?! We don't even normally get off until 5p and wouldn't be home until 5:30! Needless to say AK came to the appt. but had to leave before the doctor even came in to see us. I was so upset. I spent the next two and a half hours talking with Dr. George, collecting stacks of prescriptions and going over a game plan for a diagnosis, all the while trying to wrestle and distract a very cranky 18mo from staying out of trouble. To be honest, most our conversations didn't sit well with me. She seemed to have an extremely lax approach to treating this disease, she even offered the option of doing nothing. If you don't treat and bring the disease into remission you will destroy your esophagus, potentially never be able to eat food, endure painful esophageal dilatations breaking the rings, etc etc. I couldn't believe she even offered that approach which then led me to finish the rest of our conversations. We agreed the most realistic steps are to remove all foods from her diet, ensure she is getting 34oz of formula each day and maintaining her weight. We have two weeks to have her diet in place and the meds doing their job well. After that the clock starts for another scope and biopsy in 8 weeks. So 10 weeks total, we get to do this hell week all over again.
Friday, March 29th
That night Annabelle was up from 2-4:30a coughing and choking. I was less than a minute from taking her to the ER. It looked so similar to an asthma attack but different, it also looked like croup but sounded too raspy/wheezy. It was bizarre. I called Dr. George the next morning to discuss two things: Pulmocort prescription costs $435, we need another option. And the coughing, I need help. She listened to her over the phone as we were talking and said that if she starts again that she needs to go to the ER. In the meantime she would work on the prescription. She did call back, and that WAS the generic and it WAS with my insurance, for a price of $435! Good god, Im going to need help.
I decided the kid had been inside so much this week. It's Good Friday, let's go see the Easter Bunny. All was going well until we were standing in line and Belle started coughing again. We quickly took our picture and I left. Drove straight to Chippenham ER where we hung out for the rest of the day. She had Tracheitis from being intibated Monday during the procedure. They gave her a couple meds and she took a nap on my chest. Mady was an ANGEL for being stuck sitting on a hospital bed for an entire day. I was very proud of her, she's been a champ this entire time. She tells people "My baby sister has boo-boo's in her tummy. She can't eat". lol
Saturday, March 30th
I wanted to go to Short Pump to try to begin the kids easter shopping. I haven't bought the first thing and wanted to at least get their easter shoes, a bathing suit for their basket etc. We left the house so late that we only had time to lap the mall unsuccessfully and then run to Whole Foods to pickup an insanely priced chicken salad to take to Shawn & Amanda's Easter Egg Hunt. This was our first event since going off all foods. In many ways it broke my heart, BUT Annabelle did end up doing great! I just kept pushing the formula on her and she seemed to stay satisfied. We hung out until everyone was on the verge of meltdowns. Got home and got both girls in bed, Annabelle's neb treatment and then I ran out. I went to Southpark Mall to find the kids some shoes.. side note: we have GOT to move from this ghetto, ridiculous place. Im over it. Then I made my way to TRU and spent entirely too much trying to fill an easter basket with no candy or chocolate! I finished the night at Target getting the loose ends and buying every sippy cup they sold for the little girl. Mady made out pretty well too. It was nice to get out, but I was exhausted. I assembled the kiddos baskets, made sure everything was placed just perfectly and went to bed.
Sunday, March 31st Happy Easter
Of all days for the kids to sleep in, they would on Easter Sunday when we need to be at church! AK jumped in the shower and I went upstairs to get the girls. We brought them down and destroyed the baskets, I really expected more excitement, but without chocolate and only an outfit and sippy cups, you can't get too much excitement. While AK dressed them, I showered and we moved quickly into our routines of getting our family of 4 out the door without running 30m behind. We actually made great timing and beat mom and Mike to church. I stepped out the van and realized I was incredibly overdressed. What kind of church is this?! Belle went straight to Sunday School and Mady wanted to go to church with us. I was hesitant but she insisted. We stopped first for coffee and warmed banana bread with butter, mmm. I like that the church did that. It doesn't cost anything really and I loved having a coffee for the service!! The service started with an exerpt from the guy on Duck Dynasty, I really enjoyed it but the rest of the service was odd. It was like being at a rock concert with a cross on the stage. The pastor wore jeans. I don't know, I think I really looked forward to being able to sit in church and being in touch with Jesus, there were a lot of things I needed to say to him, pray with him, thank him for and beg for help. I needed to feel him and his spirit and it was hard to get there with banging drums and four electric guitars and the singer jumping up and down as if she was at an ACDC concert! Odd. When the service was over the doors opened. It was POURING! I hurried to get Annabelle from Sunday school, I missed her, and we waited for AK to pull up with the van. Moms dinner was actually very nice, we met Mike's parents and they were so sweet. Annabelle napped while we all ate and Mady sat in the highchair :) It was a great Sunday.
Afterwards we headed to Prince George. There was a little harder because again, another function, more food, and my baby can't eat. We tried to hang out outside a lot but it was so chilly. Fortunately the time passed quickly, the easter egg hunts were adorable watching the kids run around and the big kid hunt was fun as always. I got closest Ive ever gotten to Chris, I got 52 and he got 58. I swear he cheats somehow, I don't know what he does but one year I will beat him.
Whew, I told you it's been an adventure!! It was a whirlwind of a week. I have spells where I can't hold back the tears from dripping off my chin. I am heartbroken that my girl will never be 'normal' whatever the hell that's supossed to mean. She will never be able to eat in a restaurant, ever. Our best hope is for remission, this disease will never go away! Mady is the biggest trooper I have ever seen. She's as sweet, tender, compassionate as ever. I love those qualities about her. She is the perfect big sister, hands down. Annabelle will be just fine, I know she will but she has a long road ahead of her. I promise I will be there every single step of the way. I will always fight for her and the answers and help she deserves.
My mission right now: Medicaid as a secondary insurance. We make too much money to qualify but I found a waiver that excludes the household income and only pertains to the income of the applicant, Annabelle, and she doens't make any money. So now I can just pray she can get approved. Im working my butt off for that.
I need to get organized big time. I am already loosing track of the insane amount of information that just stays in my head, eventually things are going to start get deleted in order to hold what I put in! I bought a couple things to begin a binder to keep everything organized the way it should be, so hopefully that works out for me.
Resources saving my sanity and draining my phone's battery:
You never think it's going to be your kids that get sick. I read stories, blogs, watched videos and the research of kids with EoE and never in my wildest dreams did I think she would be that 1 of 10,000 kids that would have it. Here I am, I now have a kid with a disability. Never, in a million years would have guessed it. I didn't ask for this, Annabelle didn't deserve it but it's the cards we were dealt. The way we get thru this journey will make all the difference and we will, with flying colors, soaring high we will get thru this!
The best things in life are about so much more than just food.
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