We never, in a million years thought we would be here. At most, we imagined our marriage would suffer the typical strains.. finances, bickering disagreements about what to eat for dinner, not seeing eye to eye on disciplining our children, perhaps job loss etc. But never, did we ever imagine that each and every one of our 'family vacations' would be held in Cincinnati Ohio as we await the moment where we hand our daughter over to an anesthesiologist for the 27th time in her life. Never could I imagine the debt our family would carry, the heavy, grieving, frustrated and broken heart I would wear on my sleeve and the strength this nightmare would offer our family as we stick together.
But as life has it, and as funny as God thinks he is in his ways... here we are.
I didn't sleep a wink. At most I may have caught an hour-ish, but it wasn't restful. Every single worst case scenario of the OR would run thru my mind, and as I watched them play out in my head, my prayers would scream louder, "PLEASE GOD! PLEASE PROTECT MY BABY!" I prayed that the sun would finally appear so we could end the loneliness and quiet of the night.
The girls were awake at usual time, 6ish and I quickly did their hair and began to get them dressed. Mady was hungry and I kept having to remind her to stay quiet as Annabelle couldn't eat so no one would be eating that morning (not in front of her at least). Annabelle knew what was happening, she knew this was surgery day and she was so nervous. She randomly pleaded out "Mommy, can we go home, do we have to have surgery today"...she knew the answer but bless her heart, she wanted to try. When I would explain what's happening, she would cry or pout, but Mady was quick to jump in line to offer a distraction.
Traffic in Cincinnati is horrible. And since we switched hotels, we are about 30min outside of the city, NOT including Monday morning rush-hour. Needless to say, there wasn't enough coffee to keep my blood pressure from skyrocketing after the day we were already beginning to have.
AK parked the car with Mady and met us upstairs (they also took advantage of this time to eat their breakfast away from Belle.) Once upstairs, we did our standard vitals and Belle clung tight to this trips favorite stuffed animal - "Tubey Puppy", he's a doggie that we put a G-tube / Feeding Tube into his belly just like Annabelle's. She loves him.
As we waited for daddy, sissy and/or the doctors to join us in our room for our Genetics consult, Belle hit her fight or flight moment, she pleaded to go home, she begged 'I will be a good girl mommy and use alllll my manners. I promise. I won't have accidents in my undies anymore, please mommy, please can we go home, I don't want to be in the hospital anymore". Her words are still ringing in my head and stabbing me in the chest. I tried so hard to explain to her that she was NOT being punished, that her accidents are at absolutely zero fault of her and if I didn't think this would make her boo-boo's better, than I would surely get us home super fast. But I know these procedures are going to make her feel so much better...... convincing a nervous 5 year old that the long-term benefit is worth the sacrifice of her short-term/now fears = impossible.
I held her tight and fought back the tears...
Daddy and sissy met us in our room before Dr. Burrows, our Human Geneticist, joined us. When he did... things suddenly took a turn for the worst.
"I am so very sorry Mr. and Mrs. Bishop, but insurance is repeatedly denying any testing for Annabelle... we can't do the testing today"
And just like that, our #1 goal for this entire trip was stripped from us and shattered.
Dr. Burrows could see the pain tearing across my face and he tried to talk thru multiple other options that we may have. We spent the next solid hour trying to figure out how to make the genetic testing happen... we came up with two plans:
- If Annabelle is admitted after surgery, we will do the DNA extraction at that time and order the testing thru the hospital, coding that it's necessary for her medical situation.
- If she isn't admitted, we would draw labs and hold the bloods until we can get a preapproval from insurance, and we would then send the blood to an outside vendor that does genetic testing.
By comparing Annabelle's information to ours, we will learn about inheritance patterns, whether or not we passed this condition down to Annabelle, and if so we will learn specifically which parent passed it. It will also tell us whether or not it has the potential to affect any of our other children.
When being part of Exome Genetic Testing, we are also offered the option of the 56 Gene Screening that discloses whether or not you carry the genes associated with cancers, adult onset chronic diseases, cardiac disease etc. This information is not necessarily what we are looking for to diagnose Annabelle, but if the option to know whether or not in the future if she is predisposed to some of these diseases, we would like to know. Unfortunately, if we choose to learn this information about Annabelle, since they are comparing our genetics to hers, we will also in result learn this information about us. The downside to learning this information, is that it has the potential to make us uneligible for Life and Long Term Care or Disability Insurance. We cannot be denied health insurance of course, but because we've now had genetic testing, we can be denied the other.
Because there are so many advantages and disadvantages, Annabelle's a minor, and were essentially playing God in some ways of how much information we may potentially learn, AK and I have to be 100% on the same page in order to perform any testing on Annabelle. We decided we were ready. We are ready to learn everything we need to hear to help our daughter... the good, bad and ugly. In another situation I would be making a very different decision, but where our life is now and the necessity of how urgently Annabelle needs answers, we are ready. No questions asked. We will continue to be coached and will have a team explain the results to us when they come in.... I am nervous about those, I am scared to death to hear the words "Annabelle has x,y,z and it was passed down from the mother.." etc. but who knows. I have several months to get my head where I need it to hear whatever is in store :)
Bottom Line that we were strongly reminded, multiple times before we left the visit:
- If we find an answer, we may not have a treatment.
- We can't change genetics but we can alter the way our body reads them to better her body function.
- There's a higher chance we learn nothing than learn something; it doesn't mean that what Annabelle has isn't genetic, it's just that were not there yet medically to diagnosis it.
After our genetics appointment, we made our way to admitting and Same Day Surgery. Mady stuck by her sissy's side every step of the way.
Belle was so nervous but the nurses at Cincinnati Children's are priceless. They treated Tubey Puppy as another patient the entire time..
Both Annabelle and Tubey Puppy got their arm bands. Annabelle always has a second red band to indicate all her allergies.. Tubey Puppy had one too that read "Allergic to Chocolate"... bc.. he's a dog.
Once we were settled into our room, the team began to meet us before the procedure.. this is when the doctors, nurses, surgeons, anesthesiologists etc will come to discuss and confirm one last time our game plan. These conversations are critical and typically where I will sit on the opposite side of the room from my family so the doctors can have my full undivided attention and I can assure everything will go according to plan..
1st problem: They had the wrong GI surgeon scheduled for the OR with Annabelle. I immediately stopped our movement and demanded an explanation. I was under the impression that Dr. Kaul would be performing the surgery but apparently, they scheduled one of his colleagues instead. I wasn't happy, mostly because of the sudden change of plans. but I agreed that I would allow him to do it but not until I meet with him personally first and we talk. That's my baby you're operating on, I want a face to face conversation on what you're about to do! And thank goodness for it, because when he came to our room, he was under a completely different understanding about the surgery than what was discussed. He had different intentions in the OR than what we talked about with Dr. Kaul on Friday. I made him call Dr. Kaul in front of me so we could all three be on the same page. . . . 45min later, everything was settled and we were back where we should have been - same plan as before, we would be doing everything just like we discussed last week and the new surgeon was brought up to speed on our expectations. My heart was in my throat at the potential of missing this - what if I were the type of mom that doesn't question everything? what if I were passive and allowed doctors tell ME what they're going to do instead of asking questions? What if Annabelle didn't have an advocate that would speak on her behalf? I am not, NOT giving myself a pat on the back by ANY means, bc this is my child and goodness I don't need a kudos for being her mom - but I am simply explaining the horror and fear that I do have if Annabelle didn't have someone to speak for her. What about ALL those kids and people that don't have their voice in the medical world and don't have someone to speak for them? My heart aches and stomach twists at the thought of what happens to them.. how quickly you can become lost, mistreated, mistaken, overlooked and accidents could happen. We are all people, but just because doctors and surgeons make over six figures a year doesn't mean they don't make mistakes, they're humans. And it's our job to be a solid second set of eyes, especially when it's your baby under the knife.
:stepping off soap box:
Once the GI surgeon was finished and we were all clear on our game plan, he left the room with a team of other nurses as they had to re-prepare the OR to accommodate all the changes in the plans. That's when we met the general surgeon who would be doing the muscle biopsy. I thought she would be removing only muscle, but actually, she removes skin, tissue AND muscle all the way from the surface into the muscle of her leg. She marked where she would take the sample and discussed what recovery would look like. After the general surgeon was finished and left, it was time our nurses cleans the area :)
Before we knew it, the time was nearing where we would have to say our "See you later's.." Mommy's heart sinks, Daddy wears a brave face and Madelynne tries to stay strong and determine her opinion based on our reactions. There were so many nurses and doctors in and out of our room, the distraction was welcome but it was overwhelming for all of us.
Wheeling down the hallway to the OR.
In the OR, Annabelle made it very clear to her team that Tubey Puppy was the one in their to have surgery, not her. He wanted Strawberry flavored gas, just like her, and he was nervous about his IV so be very gentle with him.
She had the OR in stitches of laughter :)
Strawberry flavored gas.
If you've never been in the OR and seen your child put under anesthesia, I am here to tell you it is one of the most heart wrenching, painful things to ever watch. My stomach turns at the sight and thought of what's happening to her as I see her little weary eyes trace the room and the life within her die away.. AK has only seen her being put under anesthesia once and he told me immediately afterwards that he never wants to see it again. You should never see your baby in that condition.... it leaves a hole inside you fearing whether or not that was the last time you will see them conscious again, last time you'll see their eyes again, and they're glazed over and lifeless. It's awful.
Annabelle however, oh my goodness, she handles it so beautifully at this point, that I am in total awe each time. She used to fight anesthesia and the process and now she holds the mask herself until we lay her little empty body down to her back and her eyes fall back. Sweet, sweet baby..
Because Belle did so well, they choose not to admit her afterwards (thank heavens). We spoke with the Geneticist and he put in the orders to draw the blood before Annabelle's IV was removed in the PACU. They called two extra nurses and while my sweet baby was asleep, they did the draw. I can't lie, I dropped a tear or
The next day, Tuesday, Annabelle woke early and was excited to go see Noah's Ark as promised. We had hesitation on whether or not she would physically be ok to go but she seemed happy and full of energy to do it. We headed that way and unfortunately shortly after noon, I think the drugs from surgery began to wear off and her pain kicked in. Her leg was hurting her so badly. She couldn't eat or drink without her throat hurting her and her stomach was a mess. I gave her all the Zofran I brought from home and never her lapse of Ibuprofen and Tylenol but it wasn't seeming to provide her much relief.. she wanted to go home... so back to the hotel we went. She told us so many times during the day, "This is a really really bad day for me... this is my worstest day EVER". Belle rarely, RARELY ever complains of pain, so to hear her cry and see her physically hurting was torture. We took her back to the hotel and found the Disney Jr channel where she made her bed and we watched TV for the rest of the evening.