Saturday, January 7, 2017

Emergency Trip to Ohio.

"Hope is not pretending that troubles don't exist. It is the hope that they won't last forever. That hurts will be healed and difficulties overcome. That we will be led out of the darkness and into the sunshine."

We're in the midst of our first food trial in years. Annabelle chose to trial Pig (pork, ham, bacon), we are thrilled to have the opportunity for another protein in her diet. When we agreed to do a food trial, we made a compromise and promise to Annabelle that this would be our last trial thru her disease until she is much older and she can make these decisions for herself.

In a perfect world, we would want so much more for our daughter. We would want her to be able to enjoy a birthday cake, or eggnog, or a cookie and trick-or-treating, we would want her to be able to run, skip and swim all day without pain, we would love to allow her to play in the chick-fil-a jungle gym at Christmas or attend an inflatable bounce-house birthday party without wearing a face mask. Then again, in a perfect world we would also wish for Madelynne to be more flexible so she could do the splits like her sister or have a dash more common sense so she doesn't walk into walls or trip over air (laughing, but that's so my kid lol) - reality is that we have and love our children just the way they are. We wouldn't change their personality, abilities or limitations for a second but we do pray for a happy, healthy and pain-free childhood. Our only goal in raising our girls are to keep them as healthy, safe and loved as we possibly can and let God do the rest.

That being said, I do want to share that our family is coming to such a peaceful place with who and where we are. I am so happy to say that - wow - I literally just exhaled. For years it's felt like we have swam against the current in fighting for our daughter. And we have! I have stood toe to toe with Physicians in more hospitals across more states than I care to count. Together as a family, we've spent more holidays in a hospital bed than we should, I've wiped more tears and held down a baby like no one ever expects to. AK and I have spent so many sleepless nights, ridden with fear and worry for our family and it's all finally taken us to the place we are today. Those fights, tears, sleepless nights, money, heartache and brokenness was all to carry us here... I wouldn't change a single thing to be where we are. In peace with the brokenness, finding grace thru the pain and seeing all the blessings that God grants yes.

The amount of clarity in our lives that I parent with now is priceless.

I wanted to share that insight of our lives to bring you to where we are with Annabelle and in our family today.... let's start with the least painful:

Insurance has denied all our appeals for Genetic Testing.
The denial letter states, "Based on the review of the information provided to us, the service you have requested (Exome Genetic Testing) is considered investigational/experimental and is not covered. Your doctor has requested genetic testing for you and your mother due to your medical conditions. Medical studies do not show that this test improves health. For this reason, it is investigational and not medically necessary. This decision does not mean you cannot or should not receive this service. But, this decision means that if you do receive the service, it will not be covered on your medical plan."

My heart drops for our daughter. True, Genetic Testing IS experimental, but it is the only way to know what is genetically wrong with Annabelle. We have spent years, tests and so much money in preparing for this Genetic Testing, we were so close and now insurance will not participate :( Basically, they don't want to play along because we cannot guarantee the test will find anything (we're 99% certain it will, but we have to look first!), and if we cannot guarantee it will find something, then we cannot guarantee it will change Annabelle's Plan of Care.

I CAN guarantee though, that having this information, and the ability to finally label and understand what is wrong with our baby girl, we WILL be able to improve her quality of life, care, we will be able to recognize what helps/harms her system. We will have a label for doctors that opens up so many doors to providing her the best treatment possible. We will know how to advocate for her, find her the best doctors that specialize in her case, and not walk blind into the unknown world ahead!
  • Tiny example: Insurance denies our wheelchair for Annabelle. Why? Because her only diagnosis of Eosinophilic Esophaghitis, a GI Auto-Immune Disease, does not impact her ability to walk. Absolutely true(!), but the undiagnosed side of Annabelle DOES impact her ability to walk, muscle strength, endurance, fatigue etc. None of those things are associated with EoE, but Annabelle experiences all of them. And until we have a diagnosis that reflects ALL of Annabelle, she will never get the services she needs to live the best life she can - aka: wheelchair. So for now, we pay cash.... bc we don't have a diagnosis...  clear as mud?
We are still fighting hard for Genetic Testing though. Without this test, we are practically at a dead-end in her care and progress moving forward. On the other side of this door is an answer that has the potential of saving our little girl... I just have to find another key to getting it.

Now for the unpleasant news that I didn't want to have to share.. Annabelle's body is crashing. 

Everything had been going so well! She had been enjoying life so much in fact, that I've remained terribly secretive in sharing the good news for hopes of not jinxing it (haha, a little superstitious, I am). Until week 7-8 of her food trial, we had hopes that she would be gaining pork into her diet without issue.. Unfortunately, right before Christmas, the progress came to a screeching halt.

The night it all began, Annabelle was making Christmas cookies with her cousin, sissy and friends.. in the midst of the fun, she came to my side with eyes the size of quarters and told me something was wrong and her boo-boo's were hurting again - I assumed her belly was bothering her from dinner or extra sugar, but she wouldn't leave my side. She curled in my lap and I could feel her exhales and moans - with friends and neighbors surrounding me, my mind raced and instinctively I knew "this is it.... she's turning a corner.. hold on mama, it's begun" - But that's the worst part of this disease and the rest of Annabelle's body. When she begins to spiral away from us, we have absolutely no clue how to rescue her and stop the painful manifestation. I gave her meds and started removing pork from her diet in hopes that the pain would start to subside. Days before Christmas, I called her team in Cincinnati and reported what was going on. They scheduled us for a scope at the end of January and we all prayed she would improve so that we could complete the 12wk food trial and have a clear answer if we can keep pork in her diet (we so desperately wanted this source of protein).

Christmas service at our church, Atlee Community. 

Christmas was a struggle for Annabelle. She wore a smile everywhere we went, but she sobbed in pain every evening. After the Christmas activities were over, she curled on the couch with mommy, daddy and sissy, and we didn't leave the house. For nearly a week straight it was Bathtime.Jammies.Bedtime.Snacks.Bathtime.Naptime.Bedtime.Snuggles. I cautiously watched my daughter from a distance and began to die inside... there is nothing I can do to help her, I have prayed so hard, but damnit this disease and whatever else plagues her body has reared it's ugly head and again torments our family! I am so helpless in this fight, and it kills me.

Around New Year's, Annabelle was again laying on the couch watching TV. I went to her side to check on her and noticed piles of hair around the couch. I immediately snapped, "Annabelle Grace! Did you cut your hair?! Where did you get scissors? Where did this hair come from?!" She was so surprised and disappointed as she cried back "I don't know mommy! I didn't cut my hair! I promise!" Her words sounded innocent so I cleaned the mess and went back to household chores.. sometime later, while standing in the kitchen, she began to have another bout of pain where she started ripping clothes from her body, kicking the blanket off and then . . . . ripping her hair out while crying. My stomach sank so fast I thought I would vomit. Immediately after consoling her, I phoned Cincinnati and put in a mayday call to get something started about getting her help asap.

Within days (this past week) her body began to shift again and her cardiovascular system began to show signs of dehydration beside being overly hydrated. Between her heart rate continuing to rise (Pulse: 103) and her blood pressure dropping ( BP: 81/55 ) more and more with each day - we knew something was happening to her little system. By Thursday, her doctor instructed us to stop giving her pork and take her to the Emergency Room immediately. Annabelle's nurse and I have been watching her like a hawk. I spent most the week at home with Annabelle where we could keep a close eye on her changing little body.. her nurse and I agreed to continue working hard at home to keep her hydrated and try to get her BP up on our own to avoid the hospital. Meanwhile, Annabelle went onto three Physicians stand-by lists for the next available time slot for an Upper and Lower Endoscopy. We waited, we prayed like crazy and waited....

By Friday, things continued to get worse. Her blood pressure lying down was 100/58, pulse 78 - pretty good for Annabelle :) However, while sitting her BP was 94/60, pulse 89 and once she stood up it dropped to 85/44 and pulse 92. Each time Belle stands up, she tries to vomit and will seldom fall back down. She's screaming in pain, refusing a lot of foods, coughing and choking on everything and generally declining. By noon on Friday, I spoke with our team again and they called back within the hour - We needed to get her Cincinnati as soon as we possibly can so they can treat her right away if she crashes any more. They're admitting her first thing Monday morning and her doctor gained privileges to the OR on Tuesday (not his allotted OR / Surgery day) and we will investigate then what is happening. At this point, sadly we've sacrificed our food trial :( I know, in the grand scheme, it's the least of a concern but in the back on our mind, we really did want this for Annabelle. On the surface, something terrible is happening to our daughter, and we have absolutely no idea where to begin.

Tomorrow morning, Sunday January 8th, AK is taking us to Baltimore Airport where Annabelle and I will take a last minute flight to Cincinnati, Ohio. The weather in VA has not been friendly this weekend and I don't want to risk the drive thru the mountains, especially in the condition Belle is in right now. Unfortunately AK cannot come with us :( He has to work and stay home with Madelynne, so I recruited my Grammy for the adventure. An extra set of hands sometimes is helpful when I'm alone, so I am looking forward to the help on this trip.

We do not have a return flight because our doctor couldn't tell us how long he plans on keeping Annabelle... he said she won't be able to come home until we learn, resolve and improve whatever is happening to her little body. My prayers are that we won't be gone more than a week, but heavens knows how long we will be living in the hospital during this time :( As eager as I already am to get back home to my family, I do know that the best for Annabelle is to stay in Cincinnati until she is comfortable and no longer in pain, regardless how long it takes.

From the bottom of my heart, I offer my apologies for the delay in an update.. I truly wanted to only share good news with our prayer warriors and family for Annabelle. My heart shatters to share this news, my heart sinks with every word of sadness in such a wonderful time of the year. Half our family celebrates the joy of the season as one of our daughters spends the weekend building snowmen with friends and Annabelle returns to a hospital to face her reality .. the reality of a 5 year old, Kindergarten little girl suffering, struggling in pain, unable to balance her body and flying an emergency flight to leave her family behind and head towards more pokes, surgeries, hospitals and procedures where they will inevitably break her spirit and remind her exposed and gentle soul that the world is cruel and unfair.
My . Heart . Shatters .
For all of us, me myself as her mommy, for her daddy that has to say goodbye to his favorite little 5yo, to her sissy that has to spend every night with a soul full of worry, my heart hurts for you that has to read these words and learn once again that all your prayers for this sweet little girl have again gone unanswered.

I trust God hears them, all our prayers; I do not believe he makes bad things happen, but he allows them to happen in order to teach us and guide us and shape us. I trust he loves my daughter more than I, but it's so hard to remember sometimes. I guess all we have left is to trust that everything will be ok in the end, in the meantime we love her as much as we can, we pray for her comfort and healing, I will advocate for her the best I know how and hope our medical team can quickly and swiftly begin to comfort her body and rid it of pain. I also pray you will continue to keep her in your prayers, keep my little family in your prayers for a safe flight, safe travels and protected hearts as we navigate very difficult waters ahead, while hundreds of miles apart. Thank you all, thank you for loving my little girl as much as we do..

Annabelle and her cousin snuggles

Wednesday, October 26, 2016

Biopsy Results are Back

I can't believe we had to wait so long for our results.. we've never had to wait longer than 3 days and this time we waited 8 days for the final result. Dr. Putnam wanted to make sure they were correct before sharing the findings with us.

Before we left Ohio, we met with the GI team. That Thursday we intended to discuss the biopsy's but they weren't back yet.. we stalled.. we talked, discussed hypothetical game plans, reviewed how Annabelle was doing overall and stalled some more with the Doctor. After a while, we decided that we probably were not going to be able to wait for the results and discussed two plans with Dr. Putnam.

Plan 1 - Good Report from Biopsy's
If by a miracle, the biopsy's are clear and she is in remission - we agreed Annabelle deserves a new food and could use more protein in her diet. We haven't been able to consider this for years because we weren't allowed to alter her diet or aggravate her system while we were exploring the genetic testing. Now that the muscle biopsy and DNA extraction is done, we are free to begin life again in managing her Eosinophilic Disease.

We talked about foods and which would be a good idea to trial. I asked questions like, "If she can have chicken, why can she not have eggs?" The answer, "They are very different types of protein and it's that protein that triggers the disease to activate. Eggs are a top offender of EoE and cannot be considered to be part of her diet for a long, long time, if ever." The more I asked about new food recommendations, the more Dr. Putnam would remind me, "I think you need to let Annabelle decide what she wants to eat". So, so very true. The thought and idea is so fun that she may be able to have a new food! I know she wants one so badly and I would love that for her. If we do choose to trial a new food, she will have to eat at least 4oz of that food, every single day, and then we scope again in 90 days to determine if it is a pass/safe food or a failed trial. So yes, Annabelle will get to choose but it does have to be a smart decision because whatever we add, she will have to consume it daily.

Plan 2 - Bad Report from Biopsy's
We didn't talk heavy about this scenario. If the biopsy's are still bad, Annabelle will likely loose the opportunity to eat and take anything orally again and we would go back to using drugs to help the disease heal. The idea of telling my daughter that she cannot eat anymore is devastating. We have been thru this once already and didn't feed her for 6 months.. it was torture on our family. It uprooted our entire lifestyle and changed our entire family routine. Holidays, celebrations, dinner and saying grace, movie theatres, birthday parties, EVERYTHING changed. While we know that it may come down to it again as Annabelle battles this disease for the rest of her life, we prayed with everything that it wasn't today.

We left Cincinnati last Thursday with a lot of information to think about. We left not knowing if we should be thinking and planning for the positive or negative. My mind was so happy at the idea of being able to tell Annabelle her boo-boo's were better and she can eat a new food.. I started thinking about new recipes to add to our short dinner list. I imagined Thanksgiving with a new item on her plate. I pictured her little face lighting up as she tasted something different for the first time. Then my mind would shift... it's equally likely that we will have to sit our confused, broken and faithful daughter down and tell her that she cannot eat any longer. She cannot partake in snack time at school, she'll be in the cafeteria at lunchtime without a meal. I decided in my head that we will not be celebrating Thanksgiving and we would do something fun instead. I listed all the things I need to rearrange, I will remove her snack bucket in the pantry and hide her personalized plates in the cabinet. How will we handle meals in a house of 7 people? How can I distract her for every single meal of the day? How do I explain to her broken heart that she isn't being punished but food just isn't safe for her. She doesn't know ANYONE that can't eat food.. how do I make her believe that she is just like everyone else when she globally isn't?! The anxiety ate us alive. The conversations were so hard.

Tuesday, October 25th at 12:34pm my phone rang, "Cincinnati Children's CCED" and my heart sank. I knew this was the call and I panicked. In fact, I hesitated for so long that I almost missed the call.

The words this nurse would speak will change our family monumentally... was I ready to hear it? No. I wasn't. Did I want to hear it? No. For an instant I panicked and my mind raced "I don't want to know... we will just keep doing what were doing.. the idea of good news isn't worth the risk of hearing bad news. We are happy with our limited diet and Annabelle isn't in too much pain. I don't want to hear anything ... I just want to pretend this conversation isn't happening..

Me: Hello...
Nurse: Hi Annabelle's mom! Dr. Putnam just called me and asked that I call you immediately. He's reviewed her results from pathology multiple times and we have news, are you ready?"
Me: (in my mind, NO! DIDNT YOU JUST HEAR ME?! NOOOOO!) ..... Yes, I'm ready. But I only want to hear good news.
Nurse: :laughing: well I can do that for you. Mrs. Bishop, Annabelle is in remission. The biopsy was perfect and showed zero signs of the active disease. It hasn't spread, it hasn't manifested. Your daughter is healthy from an Eosinophilic Gastrointestinal perspective.

I cried over the phone and then we went back to our previously discussed game plan.. a food trial. I asked what she recommend and she told me what Dr. Putnam has asked.
(side note, Annabelle's 'food' of choice is to have pepperoni pizza. that's her choice when you ask her.... and that's not possible, that would be a trial of beef, pork, milk, wheat and multiple spices... we can only choose ONE thing to trial and a pizza is just not logical lol).

I asked if she could try milk like cheese, yogurt, sour cream, ice cream etc. Unfortunately milk has such a high failure rate and isn't recommended.. even more, Dr. Putnam won't allow her to try cheese/ice cream etc until she trials 90 days of white cows milk ONLY and can pass via biopsy. Afterwards, she can try the rest of milk based products but again, he doesn't want us to consider it at all.

His recommendation is to trial pork, and for logical reasons.
  1. It's another form of protein, in which we currently only have one (chicken) and she does need another.
  2. It's another meat... I am so tired of chicken
  3. It has a high success rate
  4. We get a lot of food options out of pork:
    1. Tenderloin
    2. BACON
    3. Ham
    4. Sausage
    5. Pork chops
We could also trial peanuts because she does not have an allergy. Peanuts will give her a source of protein.

Through conversation with the nurse, we decided the best idea is truly to consider pork as a trial. I love the idea that it provides a high success rate for passing the trial and also that it opens up a LOT of meal options, breakfast, lunch and dinner for Annabelle. Our meal list of choices are quite limited in our house and I am eager to be able to cook more; pork will provide that opportunity.

After I hung up the phone, I walked to the bathroom and dried my eyes.. when I got back to my desk, I texted AK and told him the good news.. my mind was racing and I just couldn't wait for the day to hurry and finish so I could go home and tell Annabelle! I went to the store and purchased a card for her and wrote her a letter to tell her how proud we were of her and congratulate her on gaining remission of this disease.

As soon as we got home, I made the girls sit down and told them that we had news to share from Dr. Putnam.

Our daughter is in remission. Remission. Oh my God, her little body is healed of the damage brought on by this awful disease. She is not cured, she is still very much suffering from an auto-immune disorder and this moment of happiness could be very short lived. But for our family, this is the best we could have ever hoped for. Our prayers are for comfort, less pain and zero progression of the disease in her body. Our prayers were answered. This celebration is purely a gain of quality of life for our daughter. I am so proud of her, without her commitment to an extremely limited strict diet and persistent prayers, we could have never gotten here. Annabelle is the one that deserves all the credit to this victory. She wears a face mask when germs are around.. without a fight. She washes her hands until they're raw.. without question. She showers daily after school before she's allowed to play.. willingly. She never sneaks food anymore. She rarely cries when she learns she cannot eat what others are.. She doesn't expect birthday cake or shared celebrations with her friends. She embraces a unique bland meal at the dinner table daily. She understands she cannot 'buy lunch' at school like her friends. She doesn't put anything in her mouth she isn't supposed to. She takes her medicine without fight and she never gives up on her faith. Annabelle earned this victory.

Please know, we are so happy to celebrate this wonderful news but Annabelle still has a long, long way to go before she is healthy. This news is completely different from her genetic testing and global diagnosis that will ultimately help us save her. This news is only 1/10 of her battles, but it's 1/10 of her battle that we are winning!

Mommy, do we have any ham here at home? Can I have some now???
Yes, baby. Absolutely you can.

Thursday, October 20, 2016

We handed our baby to an anesthesiologist for the 27th time..

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:

  1. 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.
  2. 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.
Neither of those options are ideal but they were the best options available to us at the time. I agreed to call Dr. Burrows once Belle was out of surgery and we would determine then what we would do. (remember, we were not sure if she was going to be admitted afterwards or not.. it was all based on how well she did in recovery. Our goal was to be discharged, but now with the genetic testing issue, we were ok with having to stay if it were necessary.)

The rest of our conversations were around the genetic testing itself and the decisions we needed to make for it. There was such a great deal of information, so here are the highlights that we spent a lot of time discussing:

What the chances are that we will get answers, even if it means we don't get our final, global diagnosis, would we at least learn something? The very unfortunate and sad answer was, no. There's only about a 25-35% chance we will get Annabelle's answer from this testing.. while the statistic is low, its 25% higher than it was years ago. That being said... Exome Genetic Testing is the most extensive option available now to anyone. In another 5 years, we will be able to perform Whole Genome Sequencing which will provide even more answers, but for now the technology is simply not there.

This 25-35% chance does improve though when we compare Annabelle's genetics to her parents. When studying her genes, they are looking for any changes that make her different from other individuals - when they compare that specific change to us, mom and dad, they will be able to determine if that 'change' simply makes her a unique reflection of mom and dad or if that change is actually impacting her health.

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 :)

Our biggest challenge is going to be insurance. However if we continue to be denied, we have the option to generate a Letter of Medical Necessity because more than one body system of Annabelle's is being affected. Insurance unfortunately doesn't care and will not pay for the testing just so we can have answers.. they will only pay if we can prove that it will change her medical management (aka more money.. if a diagnosis means she may need a different drug, elaborate wheelchair, etc = medical company and insurances begin to make even more money off Annabelle which in result, they support the idea. It's a sad, corrupt medical world that simply makes me sick).

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 :)

Because Annabelle was now going into a specialized portion of the OR for this particular multi-part surgery, mommy had to suit up to be able to walk her to the back. Mady and I wanted to take selfies... but Belle was simply too nervous to care to partake..

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..

We waited for 3 hours in the OR waiting room. Fortunately the time passed quickly because as each of our surgeons was complete their portion of the procedure, the would meet with us individually in a consult room to discuss how things went, so every hour or so, we were able to talk with a doctor.

The first was the GI surgeon, he explained everything that he did and how well the procedures went, where he injected botox and the results we should see. I asked about the placement of her G-tube and whether or not that was still aligning correctly, unfortunately as Annabelle is getting older and growing, the location her tube was placed at 2 years old is starting to shift now at 5 years old and her stomach inside her body isn't quite aligning with the hole on the outside of her body. Therefore when we insert the tube, it's leaning quite considerably. With time we will have to move her g-tube location and surgically find another hole that will continue to grow with her body..

The general surgeon was next. The muscle biopsy went well and took about 40min to perform. Mady and I had a bet on how many stitches she would have as a result, I guessed 5 and Madelynne guessed 8.  Mady was right :) 8 stitches.

After hours of waiting, it was finally time that I got to go see Annabelle in the PACU. Daddy couldn't go because Madelynne isn't allowed in the back so they had to wait in the waiting room. When Belle woke initially, she was frantic and thrashing around but fortunately fell right back to sleep. She laid there so peacefully. I try not to touch or wake her because I prefer she wakes up on her own like a good nights sleep, but it's so hard watching her take her time.. my mommy heart is impatient to see her pretty brown eyes again.

Look at Tubey Puppy! Bless his heart, he had an IV and was also in recovery, he must have had a tough surgery back there..

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 two five watching them extract the blood. I prayed the entire time so heavy that this test would provide my baby with answers and the help she needs. This was the blood that has the potential to decide so much!

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.
Sweet Baby

Sunday, October 16, 2016

Her courage is heroic

Thursday afternoon was insanely busy, we wanted badly to get on the road early so we both made a last minute decision to leave after lunch and pack the car in time to hit the road once the girls got off the bus. AK was determined to drive straight into Cincinnati.. I had our doubts but somehow we made it, and in record time! We arrived in Cincinnati shortly after midnight and everyone crashed within minutes of our head hitting the pillow.

Friday is when the fun was scheduled to begin. I was so grateful we were able to sleep in and not hit the road early. The girls woke at normal time, around 6:15am and we lounged around before breakfast and then started to get ready.

While braiding Annabelle's hair, the questions began, "mommy, will there be any pokes today?" I couldn't promise her there wouldn't be but I told her that I really didn't think there would. She seemed content, nervous but satisfied with my answer.

Our first appointment was at a different hospital location than the main campus and was only about 20m from where we were staying. We met Dr. Burrows for our Sleep Study follow up. The findings were impressive. In my opinion, Annabelle was so exhausted the night we performed the study that I thought she slept sound! However, the results revealed quite the opposite. The positive is that it did not indicate any signs of sleep apnea, thank heavens. But it did reveal 78 episodes of movements in her sleep, averaging at over 9 episodes x hour. With these episodes, her body would come out of whatever state of sleep she was in at that time and then begin again... keeping her body from being able to fully succumb to solid REM sleep and capture rest. It's similar to restless leg syndrome in a way.. where your limbs muscles spasm and keep you from being able to remain still and fall asleep.. or in belles case, stay asleep. It's called Periodic Limb Movement Disorder.

In an effort to fully diagnose this disorder and treat it, they would order labs. Fortunately, a different doctor already ordered those same labs for another reason so we were able to avoid more lab work and just pull the results from the existing that we had already done (we did those in July). The levels can range anywhere from 0-100 but it's important to have the number towards the top end. If the number is less than 50, it's a cause for a concern, but for this particular diagnosis, it's a confirmation for the disorder. Annabelles level came back as a 14. Yes, a 14. She compared this number to another on the law work and it supported the same. So there we have it, another diagnosis in the books and likely an excellent, solid explanation for why she's never slept thru the night, stays tired throughout the day and struggles to focus.

So here's the fun part. The easiest, least invasive treatment is to supplement her diet with iron. Seems easy right? Not for this kiddo.. she's undergoing surgery tomorrow for chronic constipation, encopresis and has a disease eating her GI system. We flood her body with miralax and senna daily, and they want to add IRON?! There's just no way.

So we're exploring what to do. There are a multiple of other drugs we can consider, but we're reluctant to give meds at this point in Annabelles care. I do want to help her gain quality sleep and rest, but I can't jeopardize the work we're doing to her GI system.. we'll see how things go. We'll make a final decision on our treatment plan after this weeks surgery.

After the appointment was over, we headed to the main campus for our next two appointments. The first was to see Dr. Kaul. His staff took us back promptly and the girls played games while we waited.

Unfortunately, there was an emergency with a NICU patient of Dr. Kauls and he had to go to the OR. His nurses were very apologetic but we assured them it was ok and we would keep the other family heavy in our prayers as we waited. They asked we go grab lunch and return at 2pm, while making Annabelle a salad in the cafeteria, I got a call from the hospital, it was the nurse asking if we would like to perform the Anorectal Manometry now vs at 4:30pm since we had an opening in our schedule. I quickly accepted and we made our  way to admitting. Daddy and Mady finished their lunch and agreed to meet us upstairs once we were admitted and finished that long process... to our surprise though, things progressed extremely quickly once we were in admitting.

They immediately checked Annabelle in and escorted us upstairs to 4N where a team was waiting for us thru the double doors. We were taken to a very sterile "procedure room" where it was anything but welcoming. Heck, even I was intimidated at all the equipment and machines surrounding us. Annabelles eyes swelled and panic took over her little body. The nurse assured her that all the things in the room were not for her and she would show Annabelle the only things we planned to
use. Child Life was scheduled to be with us later that afternoon so they didn't make it for the procedure.. my heart sank as Annabelle pleaded with her facial expressions to leave. She was alone in a room of just mommy and nurses and she knew all too well that this wouldn't end nicely for her. She didn't stand a chance trying to voice her opinion, she knew she didn't get a vote towards what was about to happen.. all she knew was that she was alone and not a single person in that terrifying room would rescue her.

Our nurses were wonderful. They worked very quickly and efficiently and didn't waste any time to allow Annabelle to think about what's happening, I believe this was a perfect strategy. It didn't give her any time to panic and fight, they were very matter of fact and moved so fast that even I didn't get a moment to hesitate or talk to Belle.

The procedure was....... awful. And that's truly all I want to share. Annabelle endured more than any child should ever have but she did it without a fight (I have no idea how). We began the procedure with her begging that I hold her hand and sing her a song, within minutes she said she didn't want me to talk to her and she wouldn't let me touch her. I stepped backwards from her line of vision and respected her wishes. I told her I love her very much and was sorry, but very proud of her for being brave... tears poured from her little face in complete silence as she laid there alone on the table enduring the unimaginable. My heart was numb, my body was motionless and the gut wrenching knowledge about what was happening to my baby literally made me want to puke.


AK called during the procedure, and because neither of us expected things to progress so quickly, he missed his opportunity to be in the room with us... Annabelle was silent, crying and broken but she wasn't moving or fighting so I told him not to come upstairs and to just wait until we were finished. I didn't want her seeing daddy or sissy to upset her more and I knew the more cooperative she was for the nurses, the faster it would be over.

After the procedure, Belle dressed herself and climbed back in her wheelchair. We made our way back to Dr. Kauls office where he joined us with the manometry results.

Unfortunately, the manometry revealed everything we feared, that she indeed has extensive damage to her lower GI and has caused quite a bit of work to correct. The good news is that we expected this all along and planned for it in the OR, the bad part is that I had been praying the doctors were wrong :(

Dr. Kaul was so loving, funny, witty and honest. He explained what he would be doing while in the OR and answered all our questions. He was very gentle with Annabelle as he knew what she had just experienced.. she still wasn't speaking to any of us yet she was accepting of the Doctor. This little girls bravery and courage is so admirable, how she doesn't fight everyone in a lab coat is beyond me... then again, it's probably because she's been so defeated by the medical world that she's learned she doesn't stand a chance in the fight.. nonetheless, her courage is heroic.

For dinner, Belle wanted a bowl of olives. Yup, that's all she wanted. So to an Italian restaurant we went where we all ordered enough pasta dishes to take back to the hotel to warm for another dinner the next night. During dinner, she began to open up. Sissy laughed so hard she snorted at a joke and Belle burst into laughter at her.. our table began a laughing snorting fest just to see the smile on their faces. AK and I exhaled... thank you god for giving this little girl her laugh back.

We slept well and Saturday morning the girls woke early for Great Wolf Lodge! You could tell Annabelle was still apprehensive to trusting us and forgiving me but Mady was a great distraction and liason between the parents and Belle. The girls had a wonderful time playing in the water park, hand in hand they ran all day laughing with one another.

Thank you god, so very much for the ability to provide my children with the best experience they can have in such a hard circumstance. Thank you for giving me each of these girls, although I don't understand why all the time, I know they are shaping our family to be the best we can thru each step of this journey. Most of all, thank you god for giving my girls one another. They argue, they bicker but they balance, hug, support, understand and trust one another in the most honest and pure way. They need each other and I am so grateful they are in this together. Our journey is shaping both of my daughters into such beautiful little ladies inside and out, in a way I could have never done on my own. For that, thank you.

Tomorrow is surgery day. Aside from Annabelle's surgery at 2 1/2yrs old when we removed so much of her esophagus and stomach, performed her Nissan and placed her Gtube - this will be the next biggest surgery she has ever had.

This is her 27th round under anesthesia and my heart is in pieces. The doctors will be performing:

  1. Lower GI reconstruction of her colon, rectum and large intestine, removing anything that's damaged and repairing anything that's salvageable by dilating and stretching the muscles and injecting all 4 quadrants with Botox to regenerate the cells and help relax the nerves.
  2. Upper endoscopy to including taking biopsies in her esophagus, stomach and small intestines while they do a visual inspection of the integrity of her Nissen and damage from when the disease was active in the spring (prayers we have made it to remission but we won't know until Thursday.)
  3. Muscle biopsy where they'll remove a 3 in sample of muscle from the top of her leg.
  4. DNA extraction (method still isn't determined, it may be as simple as blood work, platelets, or removing spinal fluid, we will determine tomorrow morning how the extraction will work.)
  5. Last but not least, Annabelle also asked if the doctor would change her tubey while in the OR. We brought an extra gtube with us, but as sweet as they are, they will let us keep our own G-tube and they'll use one of the hospitals instead :) 

Tonight we will leave Great Wolf Lodge and check into our next hotel where we will stay until Thursday. Annabelle will be cut off from all formula at 315am and switch to clear fluids (pedialyte) via gtube at that time. She'll be NPO by 615am. 8am we meet with our Geneticist and discuss our plan for how and what information we're prepared to learn from the tests. 945am she will be admitted back into the hospital and surgery is scheduled to begin at 11:18am. At this time we have no idea how long everything should take, so please please please take a moment tomorrow morning and say a prayer for Annabelle and our family. Pray for the comfort of angels to surround our baby girl as she goes back under the knife and endures her 27th surgery in 3 1/2 years. Pray for the guidance and skill of all the surgeons working on my daughter and peace for our mommy and daddy heart as we wait in the waiting room. Dear god, please keep my baby girl safe.. she's so strong and we are so close to gaining our diagnosis.

Thursday, October 13, 2016

Planning for a chaotic week

Thank you all for your patience in my lack of updates lately. Because of Hurricane Matthew hitting the east coast, I have been working storm duty for Dominion Power and haven't been home with my family since Saturday. I got home yesterday evening in just enough time to run Madelynne to Piano practice, hug my babies and begin to TRY to pack for our 8 day trip. Exhausted is an understatement.. and not at all the state of mind I need to be in before our tour of Cincinnati and major surgery. So if you have extra room in your prayers, please, keep us in your thoughts.. we are running on fumes right now.

The plan is to hit the road by 6pm this evening. Our first appointment is tomorrow at 8am, so that will give us 14 hours from the time we leave Richmond to the time we need to arrive for our appointment. Given it's a 10 hour drive, we only have 4 hours, max, to sleep. We're not sure where we will stop for the night.. it'll depend on how the girls are doing and how tired we're feeling as to when we'll pull off and sleep for a few hours before hitting the road again.


Friday, October 14th 
8am - Sleep Study Follow-Up. This appointment is not at the main hospital campus, it's approximately 20min from the main hospital. We will review the results of the Sleep Study that we did in the spring. I hate that it's been this long to followup from this test, but it is what it is. Hopefully we get some help and guidance on what it will take for Belle to finally sleep thru the night for the first time in her life.

12pm - Motility Clinic Visit at the Main Hospital. We will meet, Dr. Kaul who will be performing the majority of our procedures that day and during surgery. He's the Director of the Neurogastroenterology and Motility Disorders Clinic for the hospital. We are thrilled to have him part of our team and find so much comfort that he's the best in GI Motility (Annabelle's #1 cause of pain).

1pm - Anorectal Manometry - We will be admitted for this procedure. It should take approximately two hours to perform and is hands down going to be one of the most painful procedures Annabelle has had to endure. I have not told her what is going to happen and I feel terribly guilty for keeping it from her (because that isn't how we navigate this journey with our daughter), but I just can't find the words to explain to a panicked 5 year old that it's going to be hell and allow her to spend days, hours and miles down the road filling herself with anxiety from it. I've asked that Child Life be involved in the procedure and are there to explain to Annabelle what will be happening.. they always have the best way of explaining to children on a level they'll understand. Belle will be conscious and awake for the procedure, likely strapped down.. so please, please pray that she recovers well (psychologically and physically) and everything can be performed as quickly and efficiently as possible so we can leave.

The results of this test will give our doctors all the information they'll need for when we perform surgery on Monday. We will determine how much of her lower GI is not salvageable and what we will remove and also which places in her lower GI are salvageable but to which extremes we need to treat them and pray we can save it.

After she is discharged from the hospital Friday evening, we will find a hotel somewhere between Cincinnati and Mason Ohio to stay for the night. Friday evening fully depends on how Annabelle is recovering and how she's feeling. Our goal is to find a super cheap hotel, preferably close to Mason, Ohio so we don't have to travel far on Saturday.

Saturday and Sunday
Great Wolf Lodge! We decided to bite the bullet and take the girls to Great Wolf Lodge for the weekend. We are hoping it will give Annabelle and opportunity to forget what happened on Friday and distract her from the upcoming surgery on Monday.. she will be with her sissy and the two of them can play and have a great time together making plenty memories to relive during the stressful week ahead.

Monday, October 17th 
8am - Genetic Consult - This is one of the appointments AK and I have been anxiously awaiting and subconsciously fearing. We will be consulted on what information the genetic testing may reveal and will make decisions on just how much information about our baby girl we are going to want to hear. I look forward to this consult on behalf of the quantity of information we will receive, but I am scared to death what these answers and tests may reveal. A lot of these decisions have to be made before the surgery that day because that could determine just how much and what method of DNA extraction they'll perform.

9:45am - Admission - Shortly after the genetic consult, we will head towards admissions and begin the day. They will admit her to the hospital and prep her for surgery where we will begin to meet with everyone on the team, all the surgeons, anesthesia etc

11:17am - Surgery - At this point, we have absolutely no idea how long surgery will last or what will happen after surgery is over. We don't know the recovery period or whether or not Annabelle will be admitted afterwards. Everything is truly based on how extensive of work we need to perform while she's in the OR and how well Annabelle is managing pain afterwards. Our prayers are that we can take her back to our hotel that night.. but only as long as we can manage her pain on our own.

Tuesday and Wednesday
Recovery and taking it easy. If Annabelle is up to it, we plan to go to the Ark Encounter and Creation Museum. She won't be able to walk for quite some time after the surgery so this will be an easy stroll where she can stay in her wheelchair or stroller while we explore some fun things. If she can't get around much or isn't up for it, we will spend our time watching every movie, playing every game and painting all our fingers and toes in the hotel or hospital for days :)

Thursday, October 20th
11:15am - GI follow-up - Biospy results day. Pathology will have the results of the biopsies taken during surgery so we'll meet with Dr. Putnam to follow-up from surgery and review those. Annabelle relapsed pretty hard in the spring with no plausible explanation. We have been very diligent in making sure her foods and exposure are controlled so our prayers are that her Eosinophil count has dropped since the spring. If it's remained high and the disease is still present and active, than we will have to determine our next plan.... and that likely will mean Annabelle will loose all her food again. I don't even want to think about this option, so fingers crossed for zero Eosinophils.

Thursday afternoon / Friday morning we will begin our drive back to Richmond.

Our hearts are heavy as we begin this trip. Madelynne has secretly been asking her Sunday School teacher at Church if there's any way Annabelle can have extra prayers because she is very scared for her sissy. She asks often if her sister is going to die, she asks if she will be in pain during or after the surgery. Annabelle's depression is becoming more and more sneaky as she gets older. I can tell school and activities have been an excellent distraction, but when the house is silent and she's alone, little tears fall and her face becomes pale at her reality. Annabelle's questions are so heavy lately, she wants to know if her pain will ever go away, she wants to know when she can have a real cake or be able to ride a bus with her friends and not be in a wheelchair...... she wants to know, "Why won't God listen to my prayers and make me better.. God doesn't love me like he loves other kids.. he won't make me better and I ask him every single day"

This trip has the potential to be life altering for our family. We are so very strong together, but the weight of the unknown is heavy.. life in a hotel and hospital is physically and emotionally exhausting and our faith is a constant battle when you're raising little girls to trust God with all your heart.... and then life lands you in places like ours. 

Our prayers for the next 8 days are for safe travels, knowledgeable doctors and skill in their hands as they operate on our daughter for the 27th time in her life. We pray for the expertise of the anesthesia team and miracle over her GI system that the disease has not spread. Healing for Annabelle's body as she recovers from a major surgery. Patience, skill and love as we control our daughters pain. We pray for understanding, love and comfort for both our girls as they witness and are part of a big week in our family. Love, ease of anxiety and understanding for all of us as we support, embrace and lean on one another 550 miles away from home.

Friday, October 7, 2016

Panic Button

After all we've been thru over the years, rarely do I panic anymore .. I do get nervous at times, but I don't panic.

Last Thursday I began running a high fever, it's taken until today to finally keep my eyes open and head to stop pounding (mind you I went to the doctor myself last Sunday with no answer). Mady began Monday with the high fever, headaches, tummy ache, and body aches.. she's now on Day 5 and I just had to take her in.. I couldn't take it much longer seeing her feel so crummy.

So here we have it, 6 days before leaving for Cincinnati and on the brink of Annabelle's biggest and most important surgery ever - Madelynne and I have mono.

Holy shit.. there it goes.. the panic button 😳

Having three kids in our home that attend school has been a germ nightmare this school year. Annabelle wears a face mask daily and we wash our hands constantly but somehow haven't been able to combat the germs. Belle seems better but oh my god, if she gets mono, I have no idea what that would do to our upcoming appointments and surgery schedule. We've worked sooo hard to loose it now. Most importantly, I can't imagine what a virus this dangerous would do to her little body with no immune system. The entire idea has me covered in hives tonight as I curl on the couch with my babies... dear god, please help us, please protect Annabelle from this virus, keep her healthy and strong, please heal Madelynne and I and please, calm my momma heart :'(

Tuesday, October 4, 2016

Being 5 feels crummy..

Annabelle's birthday party was last weekend, it was a mermaid themed party and all her friends joined her to celebrate. Albeit the planning and decorating kicked our butts but it sure was worth it to see our little mermaid smile. She had such great energy on the day of the party. I made her sleep in and rest in our bedroom for most of the day until her friends arrived, so by the time they were ready to play, she had the energy to keep up!

Two days later however, another story.

I came home from work and found Annabelle laying on the couch. Still wearing my heels and purse on my shoulder, I leaned over the couch and my stomach sank, "Something's wrong". I started shouting questions "Annabelle, hunny, are you ok? Do you feel ok? What's going on?" Everyone just stood there staring at me like a crazy person, but my mommy gut was screaming in fear and panic that something bad had happened. I felt all over her body and she was blazing hot to the touch.

106.2. Yes, 106!!!!!!!!!! I kicked off my heels and dropped my purse in the floor as I scooped her into my arms and ran upstairs to put her in the tub. She was limp and hardly speaking. I just knew she would start seizing any second so I knew I didn't have much time to get her temperature down.. I also didn't want her to start seizing in the bathtub, but I didn't have a lot of choice. While she sat in the tub, I gave her Motrin and 30min later gave her Tylenol. She shivered and cried as I poured the lukewarm water over her hair. Once the bath was over, I laid her exhausted little body in my bed on a towel where I watched her temp start to drop.. it got down to 103.4, what a relief.

Once it was down a bit, I exhaled and evaluated the rest of the house. What the heck had happened?? How did this happen so fast? And HOW in the world did no one see this but me?! The nurse said she was fine at school all day, Annabelle said she had a great day. Just suddenly, the fever came on. For Annabelle, this isn't unusual, but it sure is nerve wracking. She had no other symptoms, nothing. The only complaint was that her eyebrows and head hurt, likely from the fever.. For dinner I made her some chicken broth and tiny noodles but she didn't eat much. It wasn't until about an hour after dinner that she started crying in pain again, she was pleading to help her tummy.. she started demanding to make bubbles NOW! I hooked her g-tube to an extension and 60cc syringe, and voila, she poured more air from her stomach than I have ever, ever seen before in my life. It was awful and I know must had been excruciatingly painful :( The air just kept pouring out. It's never done this before.. I was baffled.

We gave Belle some more meds and tucked her into bed to prepare for a long night... and a long night it was. I couldn't sleep bc I was worried her fever would spike again and I wouldn't be there, she needed meds around the clock, we didn't want to give her any night feeds bc of her stomach. It was just a mess. That night, daddy also started getting sick.. and then aunt Sarah, one by one the house started falling apart with only a few stranglers left standing. Keeping everyone in their own quarantine was a nightmare, sending the healthy ones to school, isolating the oddballs and rotating meds was a chore. Unfortunately, I had to leave town for work so I had to balance the house before I could even leave them on their own....
this sickness has lasted all week.

It's now been a week and while most the house is well, myself and Mady have gotten sick and Annabelle still has not recovered. I am starting to become quite worried about her health and and the upcoming surgery. Her fever will spontaneously spike, she occasionally can't make it thru a meal without having to pull a good amount back off her stomach, and she's coughing terribly. Last week she spent a few days having to lay down in the school clinic after nausea waves and taking over 50 cc of formula off her stomach.

Her stoma has started to bleed and drain, which is typically an indication that her body is trying to fight something. We've been cleaning her belly/stoma around the clock but the drainage just isn't slowing... it has though, stopped bleeding so that's a good thing.

For now, we wait. I have contacted Cincinnati Children's and we are on standby in case her health begins to take another downward plunge. We just can't let her temperatures continue to spike and drop the way they have and heavens knows we can't continue to expose her to whatever germs are already spiraling around the school and in our house. The protocol in the home right now is that any time you walk into the house, you immediately shower and the dirty clothes go into the washing machine, that includes when you come home from school/work/shopping etc. We are spraying everything with Lysol but I don't know it's working... gosh I pray it is.

Surgery is scheduled for Monday, October 17th, we have to leave the Thursday prior for several appointments that Friday the 14th. I will post an update on our travel plans soon.. we are drowning ourselves in scheduling and exhausting ourselves with prayers of mercy that Belle will be healthy enough for surgery. Please pray for the same.