Scope #6

Tucking two little girls in separate beds the night before a procedure is always one of the most grim for me.. I hate it, and I hate that my mind thinks the way it does. I snuggled Madelynne in bed as AK was tucking Annabelle into hers. I tucked hair behind her ear as I peered down into the most beautiful dark brown eyes and said, "Tomorrow morning is going to be a little crazy sweetheart. Im going to wake you up really early and once you're dressed, you're going to go to the neighbors house for breakfast and she'll get you on the bus, okay?" Mady knew exactly what this meant... "Why am I going there tomorrow? ........... Is Annabelle going to the hospital? :( " I refuse to ever lie to my children and I told her yes, her sissy has another procedure tomorrow and mommy and daddy have to be at the hospital really early to get started.. Mady looked towards the window.. "Why don't you go give your sissy another kiss before bed and tell her one more time that you love her." I said.

Madelynne jumped up and raced to her sister's room, planted a kiss and I heard both of them giggle as she ran back to her own bed. "Sweet dreams pretty girl - I'll see you in the morning"
Being a parent to two different children with very different needs, different maturity levels and exposures to life - is so difficult. Times like these are what challenge those moments.

Annabelle fell asleep easily. AK packed lunch boxes and gathered things for Mady while I pulled everything together for the hospital and the next morning so we would be prepared. We both crawled in the bed late but no matter how hard I tried, I couldn't sleep. The anxiety is torture. At 3:45am Mady came to our room crying due to a nightmare (apparently a kitty cat with super sharp claws trying to scratch you is quite the fear of a 5yo in dreamland), I opened the blankets and she crawled into our bed. 4:05am Annabelle fell out of her bed and started crying - AK ran to her room to help her back into bed, but of course since she was awake, she immediately began to ask for a cup to drink.. she can't have anything to drink, she's NPO after midnight. Fortunately, she was more tired than thirsty and quickly fell back asleep within 15 minutes. The morning was every bit of the chaos we expected it to be. Mady got up easily without a fight, but I did have to wake Annabelle up. I found a comfy set of clothes for her to wear and tried my hardest to dress her quietly in her dark room as to not wake her too much. She immediately opened her eyes and watched me. She didn't say anything, just went thru the motions - right arm in her sleeve, left arm in her sleeve.... I walked to her closet to find matching shoes and the most heartbroken little voice behind me whispers, "Mommy..... where are we going?" Now to be fair, I am certain she was just disoriented and barely awake, curious as to why I was dressing her while it was still dark outside. But inside my mommy-heart, I broke at that instant.

You see, it's getting SO much harder as she's getting older. I used to just dress her and move out the door and trick her into the arms of an anesthesiologist as I played peek-a-boo, but she understands now. She understands far more than an almost-3-year-old should. I cannot lie or trick her. I sugar-coat as much as I can without being dishonest about whats going to happen. She's so smart, gosh she's wise.

"Annabelle sweety, we have to go to the doctors this morning okay? We're going to find some comfy shoes to wear and take your blanket because it's cold outside!" - instant tears begin to stream down her face. "No mommy! I don't want to go to the doctor! They give me shots and they hurt!" I pipped up and said they wouldn't give her a shot today (she's sedated when they do her IV), but they do need to look to see how her boo-boo's are looking and if they're getting better. She wasn't happy at all. We moved quickly into distraction-mode. Fortunately, the morning was rushed so we didn't have much time to focus on the conversation about the hospital, we were too busy finding a jacket on this cool September morning and getting out the door!

We arrived at the hospital and Annabelle clung tightly to my shoulder. The threshold doors of a hospital are the worst. I don't know if it's the smell, the atmosphere or just all of the above but crossing thru the doors of a hospital are what turns the page in Annabelle's book, and it's never a fun chapter to read :(

Registration was simple as pie. They had all our information as usual so we checked in long enough to get our ID bracelets and wait to be called back. Annabelle was doing well. She stayed occupied by playing with daddy's watch, looking out the windows and playing games on our phones. Finally it was time to head back and my stomach sank. Annabelle didn't seem phased, but I was nauseated.

If the threshold doors of the hospital don't set Annabelle into a panic, the next guaranteed measure of breaking the kids heart is asking her to take off her clothes and put on the dreaded hospital gown. We avoid the gown at all costs.. I usually try to dress her appropriately that they can do whatever procedures they need and not have to undress her, but this time we weren't as lucky. The moment I pulled her shirt from over her head, she was stripped of control for how the rest of the day would unfold, and she knew it. She cried and begged to go home... we immediately doubled the distractions and entertainment and soon she was calmed down. My heart raced faster.

The anesthesiologist came to visit us. We discussed a lot of what our game plan would be for the day. He had multiple concerns over her cough, as did I before a procedure such as this, but I assured him that we've seen our other doctors and we feel strongly it's a reflux induced cough/choking and it shouldn't interfere with the anesthesia. I expressed my concerns over what size tubing they'll plan to use when intubating her and we all agreed to repeat the same strategies we did in the spring and hopefully that works.

http://youtu.be/NQvTzZBgBbo

The waiting in pre-op is painful. You count the minutes even though you don't know if she'll be taken back in 45 seconds or 45 minutes. Your heart is torn between "hurry up and take her so we can get it over with and we don't have to continue this arduous waiting game and distracting the nervous toddler" at the same time you're praying with everything "Please don't take her! These are my last moments of having my little girl before she is put to sleep by heavy drugs and at the mercy of a doctors skills to keep her safe in an OR, these are my last minutes before she wakes in pain and looks at me with those confused heartbroken eyes". Pre-op is the very worst.


Before we knew it, our doctor was visiting us and checking on Annabelle. We discussed again what the plan was for the day and I expressed what I was most concerned about and wanted to know while she performed the scope. Not much longer after she left, the team came back to see Annabelle and started putting on rubber gloves. I knew what that meant. I gave my little girl kisses with the fakest painted on smile while AK blew up a rubber glove balloon to take to the OR with her (she loves those things.. and if you haven't ever had to tie a rubber glove balloon, you can't quite understand the painful fingers it causes! lol). Soon it was time. Without looking back the team began singing and dancing with my little girl riding on the bed down the hall, waving to everyone with a prom-queen, cupped hand wave and saying "Goodbye! Goodbye". I could hear her little voice as I stood behind them taking her away and we watched silently.. smiling at how strong and brave she just was and nervous at how scared she will likely be the moment she realizes mommy and daddy are not right behind her as she thought. I turned away the moment I could no longer hear or see my baby girl, gathered our things and quickly rushed out the door to the waiting room where I exhaled harder than I believed possible. How long was I holding my breath?! Gracious!

AK and I both needed to eat breakfast, and we both needed a distraction. We went downstairs for a bagel and the worst tasting coffee made. We inhaled our food and went back upstairs. We weren't sitting long at all before I recognized our nurse and saw her announce "Bishop?". When that moment comes, you wouldn't believe how fast a parent can gather their things and hurry down a hallway! I know that if we're being called, that means my baby is fine, but she's awake. And if she's awake, she is upset and needs me - I wish the nurse would RUN and I follow, but of course that isn't kosher. As we were walking together to the back, she smiled and said to me, "Annabelle did great while under, the procedure went well but she's quite fiesty and mad now!" She said it smiling, I laughed back and agreed, "Yes, that's my baby girl.." inside I broke .... I need to see her NOW! HURRY WOMAN!!!

The moment I could hear her cries from down the hall, I no longer needed the guidance of our nurse, I passed her and made my way to my baby's bedside. I dropped the rails to her bed and threw her blanket off her lap to evaluate just where all her tubes and wires were located so I could best plan how to pick her up. Annabelle was screaming relentlessly, absolutely screaming but so disoriented. She wasn't fighting too bad, fortunately, but she was so confused and loopy. She couldn't hold her head up or safely control her limbs. The nurse helped me pick Annabelle up as I crawled in the bed with her as I always do, and slowly laid my baby on my chest. She likes to lay her head to my chest and I humm and whisper to her our secret little sayings. She needs to hear my quiet soft voice.. somehow it soothes her and slowly washes all the fogginess of the hospital and drugs away. She gradually comes back to me.. There is absolutely no better feeling than when that bridge happens. At the same time, around the moment she realizes that mommy and daddy are there, that she is safe and everything is all done - that's also when she realizes just how much pain she is in and recognizes the IV in her hand and that were not leaving immediately. She panics all over and the screaming begins again "Mommy go home! I go home! Take this OFF!!!!!(IV)" She had a couple sips of juice between bouts of screaming and relaxing, her vitals were looking good and all I could think about was calming her down.

That's when I heard the heels of our doctor. She always wears heels and their sound is indistinguishable. I heard her mumble "Im just going to follow the sound of the cries.." I laughed and announced from behind our curtain "were in here, you can't miss us!" She peeked her head around the curtain and gave a gentle smile at Annabelle, and then a gentle smile at the two of us. "Well.. .. .. for the good news (hooray, there's actually good news!), the visual indicators of the Eosinophilic Esophaghitis look so much better. The prednisone and elimination diet appears to be working. Then on the other hand, for the bad news, the bottom of her esophagus is red and raw. Her nissen is in tact but it's very loose." The omeprazole (compounded prilosec) we've been giving twice a day just isn't able to control how badly the acid in her stomach is eroding her esophagus. We decided to immediately DOUBLE her omeprazole and wait for the biopsy results next week to determine our next game plan. If we need to repair the Nissen, that will require another MAJOR surgery and they'll have to open her back up again to go in and make those repairs. Fortunately, it didn't appear that Annabelle had another hiatal hernia to cause concern, so we are very much hopeful that the higher dose of acid blockers will help control the damage being done to her esophagus and we can avoid another surgery for a bit longer.

So now we wait. Next week we will receive the biopsy results from Pathology and determine what to do with Annabelle's diet and medications then. In the meantime, we are working hard with our doctors to seek a diagnosis for Annabelle's, we've discovered an incredible hospital that specifically specializes in diagnosising children with histories and symptoms such as hers. We cannot wait to get answers for our baby girl. It's going to requite trips out of the state, but our prayers are in the hopes what we learn will be completely worth the cost, time, pain and frustrations. Annabelle deserves answers and our family needs the guidance and help for how to provide the very best quality of life for this incredible little girl.

October 4th, starting at 2pm - mark your calendars. Annabelle has so many incredible and loving people out there that pray and support her... we want to do something to show our love for you to be able to visit and high-five Annabelle too. Saturday, October 4th, my cousin is hosting everyone at his property for an afternoon of fun, food, music and games. There will be a corn-hole tournament beginning at 2pm and 100% of the proceeds go towards Annabelle and her medical expenses, the upcoming hospitalization out of state, prescriptions, and who knows, maybe even a new super cute tubey-backpack if begs and bats those eyelashes just right ;) Annabelle will be in attendance (of course only if she is feeling well), and would absolutely love to give hugs and high-fives to every single one of you for all that you've done for our family over the years in supporting this little girl. We will have games setup, plenty BBQ and sides, a live band, bon fire, line-dancing(!) and simply the best group of friends, family and perfect strangers we love just as family, to share a drink and laughs with. Please, please feel free to join and bring anyone you wish. I promise it'll be a good time for everyone and a great kick-off into the Fall :)

Email me if you want directions and address!

As always, thank you all so very much for your love and prayers for Annabelle. She's quite sore, has very little appetite (which we would expect) but otherwise back to her normal honorary self. The only difference from this procedure from all the ones we've done in the past is that she has lots and lots of air in her tummy. She's spent most her time laying in our bed. As soon as you hook her gtube extention to an open 60cc syringe, the air just explodes from being released off her stomach. I thought for certain it would only happen right after the procedure, but she's still full of air. Hopefully once this settles down, she will be able to find more comfort soon. I promise to keep you all updated once we hear from the biopsy results. And hopefully we will have a date to begin our travels for help very soon!!!