UPDATE:
This blog was initially created following Annabelle's first diagnosis of Eosinophilic Esophaghitis. Since then, her health has deteriorated and led us on the hardest road in search of the true answer for Annabelle's condition. Please keep this amazing little girl in your prayers and thank you for following her story.
We packed the car last night so we could roll out the door quickly this morning. Somehow it still didn't help the motivation to get out the door on time. The girls were crabby and we are exhausted. To say we started itching to get home the moment our feet hit the floor would be an understatement.
Our last appointments began at 8am this morning. The doctors immediately introduced themselves to Annabelle and our family. Within minutes they made the morning into a fun time and a game. Annabelle followed one doctor and began "playing games" to conduct her assessment and we followed the other to answer her series of questions. The questions were hard, some were painfully easy but most required deep thought that left us in a sad train of thought about our daughter.
Thinking about her mental state, everything she has been thru, the outward signs of how sad she is and how clearly she articulates "it isn't fair mommy, I don't want boo boos, I don't want pokes, I just want to play like my friends and I can't". It's hard. It's not a place you want to witness your toddler in.
After we answered all our questions, we were sent back to the waiting room with piles of paperwork to complete. Questionnaires about how Annabelle behaves, acts, thinks etc. One panel of questions were given to both AK and I - we had to answer them individually and couldn't cheat off one another. After we were finished, it was pretty fun to compare each other's answers.
Scale 1-4, does Annabelle get frustrated easily?
FOUR!
While we did our paperwork, Madelynne did her own homework and Annabelle remained alone with the psychologist. Every couple hours they would bring Annabelle back to us because she would get too tired or irritable.
We were able to break for an hour at lunch time and then ventured back upstairs to finish the testing. They were done with Annabelle around 2:30p and we could leave.
The results from the eval will not be ready for Two weeks, at that time we have to return to Cincinnati to discuss the findings and results with the team. Fortunately, Annabelle does not need to be at this appointment. Unfortunately, we cannot do this appointment over the phone, we have to be present.
They are assessing multiple angles of Annabelle, how she behaves, thinks, processes, etc. Our main concerns for Belle are whether or not damage was done during the period of time her neurological system was being damaged by ammonia in her blood stream. We see this damage outward in a couple ways.. One of the easiest to show you is the left side of her face is not a mirror of the right. Her smile is crooked and her left eye doesn't open fully most the time.
Another one of our concerns is how she has emotionally handled and processed everything that's happened to her. We know she is struggling and we feel like she is at the age we could use some help and guidance on how to help her process everything that's going on, now and in the future. She asks questions we don't know how to answer. She gets so frustrated and angry at things we don't understand. As parents, we want to know how to help Annabelle as much as I know Annabelle wants help and wants to just be happy.. The happiest Annabelle can be.
Once we left, both girls waived goodbye to Cincinnati and we talked about all our favorite parts of the trip. The Zoo and Motorcycle friends made the top of the list ;)
We got great news yesterday when we met with Dr. Putnam and the EoE team: biopsys look great! This is such wonderful news for Annabelle. It means the disease is still in remission and our scope in June wasn't a fluke at all, it means Annabelle's little body is accepting the foods, environment and zero drugs and still somehow thriving!
Take a minute and close your eyes and smile.
That was my happy place yesterday too.
When I opened my eyes, Dr. Putnam wasn't smiling. He didn't seem the least bit content with the news he just shared with us.
"Annabelle isn't ok, mom and dad. We're just really lucky this side of the disease has settled down - now we need to figure out what is causing all of this."
I wasn't following .. I wanted so badly to be in a happy place for Annabelle and throw the party I have been planning in my head all week. I wanted to giggle and jump up and down and the doctor is sitting directly in front of me with a half grin as he smiles at my daughters but so much on the tip of his tongue that he just didn't know how to say. It was a hard conversation .... A DEEP conversation, but here's the big picture.
Annabelle is still in pain. Stomach pain, pains in her throat when eating, leg pain, hip and joint pain.
Annabelle still cannot tolerate a diet like a normal child. She cannot eat enough on her own to sustain. She is still dependent on the EleCare and tube feelings.
Annabelle tires so easily. She falls asleep at school, sitting in the car, she tires after short amounts of silly play. She crashes. Hard. And usually with pain.
Dr. Putnam explained how critical it is to take this time, while Annabelle looks well from an EoE standpoint, to fight like hell to figure out what is happening to the rest of her body. To find her GLOBAL DIAGNOSIS! (Yes, I asked - this means she cannot have any new foods :( our team won't allow her to trial another food or change anything at all in her diet until we make headway with her main diagnosis. This will also give us time to keep her from being subjected to anesthesia so often. The affects of constantly being put under are outstanding and stats we don't want to be part of. If I can avoid having to hand my baby over to another anesthesiologist for a while, bring it on!)
Dr. Putnam sees children just like Annabelle often. He described her to a perfect T, so painfully accurate that I had to stop him in mid sentence and just say "thank you", with tears in my eyes "thank you for believing in us and fighting for Annabelle. You understand her better than I do, I can't tell you how much of a RELIEF that is. Thank you!"
He explained how most children with EoE, live in chronic pain that doctors can't figure out, cannot exercise because of the pain and they crash so quickly and easily, most off all - all children with EoE do NOT only have EoE, they are a puzzle with so many facets of problems that treating anything is a long, frustrating, expensive road. However, doing so and when you do get those answers, their quality of life is exponentially increased. And quality of life is our family's number 1 priority for Annabelle.
He gave us two options:
1) return to see Dr. Burrows in Genetics to continue Mitochondrial Testing. This means more money and likely a longer time before we get results back, but if we are right and we look into the right places during testing, we may have our big answer. In the meantime, we won't have more answers for her pain and cannot improve her quality of life, we will just be waiting for month / years for a test result to come back which may or may not give insight to her diagnosis.
2) consult with neuro muscular. Hopefully with that team, they can determine the cause of her pain and begin to control it. They can explore more avenues of Annabelle and work with others to really narrow down on what we need to be exploring and where the issues truly lie. We would take that information back to Dr. Burrows in Genetics and do Exome Testing. Also very expensive and not completely trustworthy but with children like Annabelle, they often have success with this route.
Meanwhile, regardless what we do, she needs to be seen in the Sleep Clinic for a sleep study. Annabelle has never slept a full night in her life. She was awake last night for example, 4 times between the hours 11p and 630am. Talk about living in the newborn stage for over 4 years!! At her age, she NEEDS continuos sleep and not disrupted, broken sleep in order to healthy and rested, have energy and learn. The poor child has never had healthy sleep in her life. It's about time we work on that.
We choose option #2. We discussed the pros and cons of each, but truly, what we want for Annabelle is to be happy, comfortable and feel as normal as she possibly can. The truth in fighting for these answers are that at the end of our road we may get a diagnosis that have no answers, no direction on where to go, no promise for a future, no medication to fix things. We may only get a name with blank pages behind it. We may never get a name! So many of children like Annabelle never get a diagnosis. They're recognized as just that, undiagnosed. Knowing the reality that we may never get a world of help for Belle, the best we can hope for from our energy wasting, money spent, hours / days / weeks / months in the hospital, tests, procedures, scans, assessments is that we can improve her quality of life with every move. So that in the end, no matter how this road ends, we will win. Annabelle will still win.
Dr. Putnam is putting in the referral to both the sleep clinic and neuromuscular. We met with behavioral medicine and clinical psychology with a neurologist today. We will continue to meet with all the specialist we need to work at narrowing in the scope of Annabelle so that one day, we can take all the information needed to do a comprehensive, well informed Exome Test.
The day was not bad. We feel great that we left the hospital yesterday with both good news and a great game plan. I still have no told Annabelle that she isn't getting any new foods, nor do I know if she will anytime in the near or distant future. She hasn't asked but she also hasn't gotten a new food in almost a year so I don't think she actually expected it, sadly. Dr. Putnam is hands down, the best doctor I've ever met. He is such an advocate for these kids that have had doors slammed in their face their entire lives. He fights for them while wearing the most gentle smile and so soft spoken. He gave Annabelle the biggest hug before we left the hospital and she fell in love with him just as much as we have.
We left the hospital in time to visit the Cincinnati Zoo. The girls had a great time. Annabelle made it about 45m before giving up on walking and needing to be held for the rest of the day, but overall they had a blast seeing the animals :)
After the zoo, they pleaded to go back to the aquarium. Being it was our last day to do anything and we really hadn't gotten our money's worth the day before, we took them back to use our tickets for another day. Once we parked, Annabelle asked if she can stay in the car in the parking deck because she wanted to rest. Mady and daddy went to the aquarium and Belle and I snuggled in the car until dinner time.
After dinner. We had the best surprise in the world for Belle. Cincinnati Bikers for Christ made a special trip to visit Annabelle at our hotel. When we pulled up, she immediately recognized motorcycles and perked up. As soon as we walked inside, i spotted strangers in leather vests, Annabelle spotted her motorcycle friends :) she greeted them with the biggest smile and "HI FRIENDS!!" It was precious, and a beautiful testament to Belle and her sweet demeanor to how much she loves everyone and doesn't let her struggles bring her down. She was too weak to walk much so she was being held, it didn't slow her down or stop her from giving her new friends hugs though.
They stayed for about an hour as we all talked, they built us up as we shared our story and thanked them for visiting. Of course I cried, I do a lot of that lately. I think the strong wall I built years ago is falling. One of the guys asked "why her name, and do you feel like she's owned it now?"
Annabelle Grace
Anna was my great grandmother that passed away when I found out I was pregnant with Annabelle but we hadn't told anyone yet.
When she was born, I didn't have a middle name picked out.. I had several that we were considering but nothing concrete. It wasn't until the evening Annabelle was born when I went to really "meet" her in the NICU that I stared at this beautiful little baby that scared the crap out of me. She had tubes and wires, she didn't have black hair like the rest of us, she was two months early and unplanned. She wasn't what I had pictured at all, but somewhere in the midst of the chaos and fears, joy and tears, I looked at her tiny toes and fair skin and said "grace, you'll bring the grace to our family that we didn't plan, can't predict, or ever know we needed". Annabelle has held true to that name ever since. My strong, fearless grandmother lives thru her with grace and poise, even thru the darkest days. Annabelle Grace was and still is exactly what our family needed 4yrs ago and today.
Just thinking about how much Annabelle has changed and everything she's given our family, bring tears falling to the floor. Bikers for Christ were so genuine and compassionate to us. They prayed for Annabelle and our entire family. They invited us to their home next time we are in town. They were just the touch of home we needed from states away. We are so blessed, SO very blessed beyond measure to be surrounded with the most humbling and loving people out there. We could never thank those that support Annabelle and our families journey thru prayers and help, enough. Thank you, everyone that reads, everyone that prays, everyone that shares her story so we have more praying for us. Thank you!
We took the day off from appointments. Annabelle is so anxious and upset, she won't eat, she is melting down every 15 seconds. Her behavior is deplorable but I can't be mad at her at all.. Regardless its making the trip difficult. We go to a restaurant to eat, she melts down for lunch, we order her food and she melts down that she doesn't want to eat and would rather I use her Tubey (feeding tube & backpack) to feed her instead. If you know Annabelle, this is NOT her. She despises you accessing her tube and now she won't eat orally and only wants her tube.
We took the day off to get our family back on track and allow the girls to enjoy Cincinnati a bit. I needed some time out of a hospital to assess Annabelle, I don't know if she's hurting, confused or what is going on. I just needed to see my daughter smile and play. Yesterday is just what we needed.
We visited the Cincinnati Aquarium and the girls loved it.... For 15m and then Annabelle pleaded to leave. We pushed thru and were able to spend a couple hours in the aquarium, maybe we can visit again before we leave.
It was a rainy day in OH so we decided to catch a movie also! Of course, my girls cannot choose the same movie. Madelynne has had her heart set on seeing Goosebumps for months. Annabelle wanted to see the peanuts movie so we split - AK took Annabelle to see Peanuts and I took Mady to goosebumps (there's a good chance u was more scared than she was!)
Annabelle was awful in the movie according to AK. She's so antsy and nervous. She can't sit still and doesn't trust her surroundings anywhere.
After the movie we googled which restaurants were within walking distance and we found Dicks Last Resort. Oh boy, this was the ticket to distracting our little family! The girls were HORRIFIED at the way adults were acting. Our waiter threw napkins at us and Madys eyes nearly burst out her head. They made the night so entertaining for all the kids in the restaurant. The girls did a scavenger hunt thru the restaurant. Belle ordered chicken and wanted both French fries AND tater tots. I bought both. Guess what she ate? Nothing.
Everyone slept like a rock and we spent the morning doing crafts in the too while AK and I did a load of laundry so we won't be drowning when we get home Saturday.
This morning we see Dr. Putnam and the team to receive the biopsy results from Pathology (fingers crossed they're in) and hopefully come up with a favorable game plan. Fingers crossed and floods of prayers the biopsys are clean and we can get a new exciting food for the holidays. How amazing would that be?!
Sunday night was so very long. Every hour, the nurse would enter our room with her supplies and we would work together to get ready before rolling Annabelle over and telling her what we are doing. She would wake suddenly, wide eyed and question everything "Why mommy?! What? What are you doing to me? Mommy no, no mommy no more, please mommy, please we go to the hotel!" I would hold her down and the process would begin all over again. She would scream and I would whisper "I am so sorry baby, I am sooo sorry :( " Eventually it was all over and I would clean her up as she fell back asleep from sheer exhaustion. An hour later we did it all over again.
Finally, after an emergency text demanding coffee, daddy and Mady showed up. Belle was tired and defeated but her sissy provided the perfect distraction. We replayed Frozen for the 15th time and Child Life brought crafts to pass the time. Around noon, daddy wanted to spend some time with Annabelle (and mommy needed a break) so he took Belle to the playroom while Madelynne and I had lunch in the cafe. Before we knew it, transportation was at our door and ready to take us to Pre-op.
The girls rode together and had a great time. They waved at everyone in the halls like pagent princesses and Belle forgot she was headed to the OR. Once we were in the surgical waiting area, she began to get upset again. She cried and asked so many questions. I couldn't answer them well enough for her... not to mention, everyone walking around us were in scrubs, headgear, face masks etc. They were intimidating as hell to a 4yo that doesn't trust a hospital. They began hooking her up to monitors and she exhaled, turned over and barely spoke another word. She didn't have much she wanted to say. You could tell she wanted to have fun and be cheery because that's just Annabelle's personality, but every time she would pipe up about something fun, she would drop her head because she knew she was about to loose a battle.
Dr. Putnam came by to see Belle, he gave everyone a high five and was so kind, soft spoken and sweet as always. He told Annabelle that she would be just fine and no ouchies. She clearly didn't believe him. I asked Dr. Putnam if he would change Annabelle's tube for me, it was nearing time for it to be changed and since she would be under anesthesia anyway, it would sure be nice to save Annabelle from some pain of having to do it while she's awake and at home. He agreed but refused to use our tube, he said he would use one that they have in stock so we can keep our own supplies. He understands the struggle of needing to keep a stock of your own supplies bc insurance could care less if you get as much of what you need or not. Dr. Putnam was optimistic that things would look good but very cautious bc like the rest of us, we don't expect them to. Annabelle complains of pain too often to look well under a scope.
Finally, the anesthesia team came to visit. They brought the good stuff with them, Versed. After I signed the rest of the paperwork, they delivered the versed and Annabelle immediately was drowsy. It didn't take long at all for her to fall back onto the bed and drift away. I could tell in her little eyes that she was panicking and confused, but soon enough she was comfortable and smiling thru a drunk giggly smile :)
We walked all the way to Annabelle's OR room where the team stopped us at the door and daddy and Mady gave her kisses and made their way to the waiting room. I stayed with Annabelle until she was completely under. Dr. Putnam was standing in the room, when Annabelle caught eye of him, he did a dance for her and she mustered half a grin. The OR was less intimidating here in Cincinnati than others I've seen Annabelle wheeled to in Richmond. The team was spread out around her and awaiting go time. Once they were ready to put the gas mask over her face, the anesthesiologist told me to give her a kiss but instructed "Tell her you love her momma and you'll see her later; we don't ever say goodbye in this room". It was nice to hear the words of encouragement and promise during a time every parent fears. Anesthesia is one of my biggest fears and my baby has been under anesthesia TWENTY TWO times. It never ever gets easier. Ever.
Once Annabelle was under I joined Mady and AK in the waiting room where we impatiently watched the screen with Annabelle's number. The surgery took twice as long as it did last time. Every single minute past what we expected, our hearts sank deeper. I kept asking AK "Whats going on? Why is it taking so long? What do you think they see? Is she ok?" I know he didn't have any of the answers and I know his heart was just as heavy. This was probably one of the only moments so far that I regretted having Madelynne with us. I wanted to break down but couldn't, I feared the doctor would be giving us bad news and I would have to process that and handle the news in front of Madelynne and I couldn't figure out how I would be able to pull it off. Mady beside us, forced us to stay strong, when sometimes, I don't WANT to be strong.
Fortunately, they finally called our name "Family for Annabelle Bishop". I jumped to attention and raced to the holding room where we consult with the doctor.
Annabelle, to all our surprise, still looks good! Visually, she looks great on the inside, she doesn't appear to have furrows, rings, plaques, ulcers etc along her GI system. Now, the biopsy's may say something different but we aren't accepting any news beside the best!! Her gtube on the other hand, was on the verge of falling out. Apparently the balloon on the inside of her stomach had broken and the tube itself was dangling and just holding on by sheer luck. Thank goodness we were scoping when we did!
Annabelle recovered very easily. She didn't come out of anesthesia hysterical like she typically does. I think the versed helped a lot with the recovery side as well. She was asleep when I met her in post-op and didn't wake up until we were back in our room with daddy and mady. We were discharged about an hour later and headed straight to the hotel, for everyone, to, sleep!!!! She slept like a rock all night.
DAY 3: Allergy and Immunology
Our plans for this trip are to receive only good news and add new foods to Annabelle's diet. I took a gamble a few weeks ago and predicted that we would pass this scope and be able to add new foods for Annabelle so I made sure to find a great allergist that works with Dr. Putnam. Keep in mind a few things, Allergies and an Eosinophilic Disease are two COMPLETELY different things. Annabelle's allergies have nothing to do with her EGID (Eosinophilic Gastrointestinal Disease) even though the EGID treats foods, airborns, stress etc like an allergic reaction and rapidly responds similar to the way we understand an allergic reaction to respond.
The reason we do test for allergies is that if we want to add food to Annabelle's diet, it doesn't make good sense to add something like peanuts ( we would never do that anyway ), if Belle has a nut allergy. Make sense? At the same time, kids with EGID typically do have food allergies and those allergies can change back and forth and therefore CAN have an impact to Annabelle and her scope results.
Testing works two ways:
1) We can test for all the foods she is eating right now. If the biopsys come back clean, that will not explain what Annabelle's pain is coming from. If her biopsys come back positive and active for EoE, it *could* be from a food that she is terrible allergic to. Therefore, we test all the foods Annabelle is currently eating to see if she is allergic to anything already in her diet to explain a) pain or b) failed scope.
2) We test for all the foods we would LIKE to see in Annabelle's diet. If the biopsys come back clean and the decision is to allow Annabelle to have a new food, we will have a list of safe things she can eat and potentially trial.
Between the foods she is currently eating, the common ingredients we would like to cook with (vanilla, nutmeg, cinnamon, salt, pepper, olive, etc) and also seasonal allergies, we tested Annabelle yesterday for 61 things. SIXTY-ONE! :(
She was nervous the entire morning. We got to the hospital (Liberty campus, about 45min away from the main hospital / our hotel). Annabelle wasn't feeling well, her tummy was hurting pretty bad and she didn't want to walk. I don't know if it was because she was too weak, hurting or depressed but she wanted daddy to carry her everywhere. Once we got into the room, daddy made both girls laugh and distracted them the best he could while I talked with the doctor about Annabelle's history. When Belle was a baby, she would typically show positive for nearly every single thing they tested her for. The older she gets, the less she shows positive for an allergy to. The last time we tested her was in Boston Children's Hospital a year ago and the only thing she showed positive was beef. Although we didn't test for much then either.
Before we knew it, it was time to begin. It was awful, that's all that needs to be said. I know it isn't the most painful procedure, I know that. But after everything Annabelle has been thru, as many times she's been forced to 'hold still' while doctors do painful things to her, this was just enough to break my heart. I held her still for 61 sticks across her back while she screamed my name the entire time. I couldn't hold it back anymore, I tried my hardest to be strong but the tears were too heavy. Annabelle and I locked eyes for the several minutes it took for the SLOOWWWWWWWWWW nurse to finally finish counting and sticking, and counting, and slowly sticking, and recounting and losing track, and sticking again. We watched each other as both our tears poured off our faces. There just weren't good words anymore. I had nothing. I could see Mady from the corner of my eye and she stood with daddy on the other side of the room. Neither of them typically have to witness this side of Annabelle, it's usually only me, but today they got to see just how hard these procedures can be on someone so little and broken. Yes "Be strong Annabelle, be brave, you're tough" - all good words and advice, but I am pretty sure in her little mind she was saying the same thing I was "Screw this - i dont want to be frickin strong or brave, I DONT WANT TO BE HURT ANYMORE!"
When it was all over, Annabelle tested negative for everything we tested. That's a great sign! It surely doesn't mean that any of the things we tested are safe from an EoE stand point but it does mean we don't have to carry an Epi-Pen with us any longer and we don't have to worry about an allergic reaction (to foods at least).
Once the doctor gave us our paperwork, Annabelle piped up and marched out the door and made a B-line for the exit. There was no stopping her and Madelynne was determined to show her the way. I think both girls were eager to get the heck out of that place! We spent 3 hours in the allergist office, that was enough for one day.
We left to get lunch, Annabelle wouldn't eat anything (she hasn't eaten much since Saturday). Daddy spotted Cabelas and since we don't have one in Richmond, we all decided we needed to take a tour :) The girls found themselves in awe at the fish tank. What did daddy buy? An orange hat for Mady for when they go hunting.
The afternoon was spent browsing and wandering around town. We took this opportunity to distract the girls from everything they had been thru the last couple days. We tried our hardest to have fun and plan to do the same today.
I am cancelling our tour to the hospitals Eosinophilic Research Center where they would educate us some more of EoE and allow us to tour the labs. As much as I want to go (BADLYYY!!!!!), I just don't think Annabelle can take another day walking thru the threshold of the hospital doors again. We have appointments Thursday and several appointments Friday. The girls need a break. I am not as strong as I thought I would be during this trip. I am coming unraveled. AK is trying to keep everyone together. Mady is too young to have to be as mature as she's being and poor Annabelle cannot eat and can hardly walk. We all need a break. I think today, we're going to the aquarium and movies. That should be enough to put our family back on track.
The morning began with a sluggish family that could have used about 5 more hours of sleep. We had to be in the hospital by 10:30a so we took our time around the hotel, ate breakfast, showered, packed and then finally we told Annabelle where we were going and why. It went over well.... not.
The hospital staff, as always, are so sweet and kind from the moment you walk into the hospital. Registration took a while but the kids played and watched the movies they had playing. We all got our pictures taken and ID, Annabelle got her fancy bracelet and before we knew it we were being escorted to Concourse A - 4th Floor, South wing in room 445. Our escort asked the girls to push the button for the 4th floor, when they did she whispered "Have you ever pressed the button with the bell?" Their faces lit up in shock, she told them to press it really quick. You would have thought she double-dog dared them to do something so extreme. They pressed it and the belly giggles didn't end until we got to our room.
Very quickly our nurses greeted us, they talked a bit to the girls, immediately notified child life for both girls and they brought crafts to do in the room. We discussed game plans and our history with these procedures. Before we knew it, it was time for Annabelle's dreaded moment, time to start an IV so we could begin fluids for an hour prior to starting the Golytely (Annabelle dehydrates and her levels become too off balanced for us to do these procedures at home, it's entirely too dangerous and although she's showing us she can go longer without food and simple IV fluids, we still find her unable to walk, maintain coordination or even speak clearly after a matter of hours without Elecare.
Mady could sense Annabelle becoming nervous and she moved towards her bedside. Annabelle choose where she wanted the IV placed, on her left hand (which truly is the best place anyway). The nurse looked for quite a while and Annabelle moaned, she laid on her back and never considered pulling away. She stared at us and pleaded not to until I told her "I am sorry sweety, they have to put the IV in and we cannot leave" I think it was that moment where she surrendered herself for the rest of the day. Her demeanor changed, her head dropped and she recognized she has lost the battle and she has no control. Thats the moment I think I also surrendered, my heart has been broken since before we left VA and I don't think I'll get it back until we get home. Annabelle wanted to hold my hand but she wouldn't look at me. Mady wanted to hold her sissy's hand and Annabelle watched her sissy, between watching the nurses she would trace the room at everyone around her bedside that was making her do this but I think the only person she found trust in was her sissy.
The nurse attempted the first stick, and completely missed. She went for a vein mid way up her forearm that I couldn't understand. She missed, dug for a bit until the other nurse finally said "That's enough, try again". That's one of the most frustrating parts of IVs.. Annabelle's already screamed, she's been so brave, never pulled away, didn't have ANYONE holding her down or still, and then once the ouchy was over, she looks at me and said "Was I brave mama?" I told her "Yes baby, but we have to do it again...." Oh my god, her face is awful. The shudder breaths and sadness across her face is heartbreaking. She once again held still, she cried less the second time as they successfully placed it in her hand.
Soon after, the girls watched a movie while we talked with doctors and nurses some more. I supplied them with extensions and tube supplies because apparently they don't have the supply for the type of G-tube we use. We began a heavy feed of golytely thru her tube around noon and I immediately asked for Zofran via IV. Belle gets nauseaus with fast tube feeds and this type of feed won't end until Monday morning at 6am. While Annabelle rested, I stepped out to take Mady to get lunch. We ate in the cafeteria and on the way back she saw another little girl with a balloon, "Mommy, I think I know what will make Annabelle happy, a balloon!" How can you say no to that? We went to the gift shop and she thumbed thru the entire book until she found the perfect one.. it had butterflies and lost of Belle's favorite colors. Bingo! She was so proud of herself as was I. On the way up to our room (which is quite a walk, the hospital is huge), Mady wanted to talk about all the kids she saw in the halls, and how some of them looked really really sick, she wanted to know if kids ever die in this hospital, if any are sick just like her sister and if everyone had their families with them. Boy that was a hard conversation!!
From 2-4pm the girls were able to go to the playroom on our wing of the hospital. The playroom was great, they had fun music, floods of entertainment and toys, crafts and games. We spent the entire 2 hours in there. The anesthesiologist paid Annabelle a visit in the playroom, him and I stepped outside and talked over our game plan for about 10min. He apparently spent time in Richmond studying and working at VCU before settling in Cincinnati Children's, he said he was considering moving to VA for VCU and I winked and pleaded he stay here.. there was a reason we are here and not 15min from our home.
A few minutes before we packed to leave the playroom, we got a call that our doctor wanted to see us in our room. We packed up and went upstairs, Dr. Putnam, Annabelle's doctor was waiting by her door. He is truly the best doctor, we spent about 25min just talking, some about Annabelle, some about Cincinnati, he pointed out some great places to check out, another great hotel suggestion etc. Before he left he assured us "I am happy Annabelle looks well right now, but this is still normal for any child, the way she looks, behaves etc. we are grateful she isn't suffering as much as she once was, but she still is not ok. We will figure things out.. I'll see you tomorrow".
He walked out the room, and just like the other times we have met with him, a smile ripped across my face. Dr. Putnam may be the only doctor in this world that understands children with this disease. He understands us as parents, he understands it all and all its complexities.
Mady and daddy left shortly before dinner so they could get something to eat. I ordered Annabelle some chicken broth for her last meal until Monday night, she loved it surprisingly. By 7pm our nurse came in and informed me that Annabelle wasn't progressing well, and I agreed. It seems she cannot have a BM on her own much at all anymore. And even after 7hrs of meds, she still wasn't able to go much. Annabelle was getting sleepy and asked that I turn the TV off (I was SO grateful, we've already seen Frozen 4x by then!) It didn't take her much time at all to fall asleep, I sat beside her with my head down and prayed. I prayed with everything I had that the night wouldn't be painful for her and that things would begin to progress on their own without intervention.
930pm the nurse came in with all the supplies to begin the process of Rectal Irrigations - thats when the night began. Annabelle got about an hour and half of sleep before she was woken in the most abrupt painful way ever. The irrigation itself takes about 15min as I hold her still while she screams and fights. We repeated that process about every hour / hour and a half until 730a this morning. Needless to say, no one has really slept, her hiney is raw to the point she is scared to pee, she can hardly roll over in bed or sit without crying. She is miserable.
Today she is NPO, she cannot have anything to eat or drink and she is begging every 30 seconds to GO. HOME. NOW! PLEASSEEEEEE!!!! I am praying some miracle happens and they move her O.R. time up from the scheduled 2:46 pm it is now. We just need to get thru this day, get Annabelle to 2:15pm and make it thru the surgery without issue.
Our alarm went off at 2:40am, by 3:15am we were on the road. We arrived at the hotel at 3:10pm. So 12hrs on the road, a hike thru a cave and emotional meltdowns. We all took a nap before dinner as soon as we got to our hotel. The girls are getting to sleep now to get a full nights rest before our day tomorrow.
When we went to pick the girls out of their beds in the morning, we found Annabelle in her sissy's bed. Mady was happy to begin our trip, but Annabelle was disoriented. She repeatedly asked what were doing, I finally broke my silence "Annabelle hunny, we are going to Cincinnati, remember?" That began the heartbreaking meltdown, at the top of the stairs beside her bedroom she moved into panic mode and proceeded to beg not to leave, to stay home, not to get in the car and go to Cincinnati. She was too disoriented to explain anything and she was too irrationally panicking to even try. I walked away and let her calm down on her own. If tough times like these, where there really is no compromise, the only option we have is to be matter-of-fact about it. No matter what, we were leaving, i just wanted to make it as painless as possible.
We made it out the door on time and before we even made it to the interstate, the girls were in complete travel - vacation - roadtrip mode. They wanted a movie, the blankets, entertainment and snacks right away. By the time we made it to West Virginia, the sun still was not up, we had already watched Despicable Me and Finding Nemo and we were just surviving our second meltdown/plea of the morning to turn the car around and go back home.
After we talked Annabelle down from her THIRD hysterical crying to not go to Cincinnati, her nurse messaged me and we agreed it would be good for her to talk to Annabelle. Annabelle and her nurse have a bond like none other, and she was just what Annabelle needed. Their conversations are priceless and adorable, the way they love each other is nothing less than god sent.
We stopped in Olive Hill, Kentucky at Carter Mountain State Park to tour the Carter Caves. It was a 2-hour tour and fortunately, the kids loved it. . . well, mostly Madelynne. Annabelle had a tough time walking and staying on her feet. She has complained of her legs and joints being sore a LOT lately, walking a cave wasn't her cup of tea, so she was held for the most of the tour.
Back on the road from the short stop, Annabelle asked again, "Where are we going mommy?" (She asks every time, almost as if she doesnt know, or shes waiting for a different response). I told her "Sweetheart, we are going to Cincinnati Ohio, We are going to make it a fun trip for the whole family but we are also seeing your fantastic doctors that are helping your boo-boos." Cue the next panic attach in the backseat. I asked her what she was worried about, and her concerns are relevant and valid, she is scared because the doctors always hurt her, she doesn't like hospitals and the smell, they take her from me and the doctors won't let her eat what she wants.. in her words "Doctors dont help me mommy, they HURT me! PLEASE dont make me go, PLEASEEEE MOMMY, PLEASEEEE DADDY!" Half of Annabelle's concerns are appropriate and I can address, I dont want her to have these fears in her mind and not be able to tell me about them. But I also feel terrible when she expresses them but I don't do anything to help her. The other half of Annabelle's concerns, are just too far beyond her comprehension for a 4yr old - and my response to her is matter of fact. Our conversations have been very long lately with Annabelle and what doctors will do and why. We are struggling as parents to explain to her on a level she understands, why we do these things. The best way I know how to approach the topic is to not ignore it, answer the best I can and offer the positives vs leaving her little mind with such negative facts. Will it hurt? Yes, it will hurt, but we will there and I bet the nurse will let her help pick a good place for the IV - if she wants, 'we can play on the tablet while they do the pokes, which games will you want to play?' Will we see a lot of doctors and spent a lot of time in the hospital? Yes, we will be at the hospital every day, but the sooner we let the doctors talk to mommy and daddy and do what they need with Annabelle, the sooner we can go do fun things like the zoo and movies together with sissy!
Annabelle is filling herself with more fear and anxiety lately than I have ever seen her do before. This is getting harder and harder the older she gets! I thought when she was younger, it was the worst because I couldn't tell her what was happening and she couldn't tell me what hurt. But now I am finding, this side is just as hard! I find myself nervous and studdering when forced to answer her questions. I dont want to talk about it! I dont want to tell her and say the words that make me cringe over what theyre going to do to her! But she knows. She lives it. Shes been thru this more times than I can count on my fingers and toes. I hate all of it. For Annabelle. For my husband to watch, listen, endure, console his girls. I hate it for Madelynne because she's been forced to grow up and watch her sissy suffer. I hate this for our family, a trip to Cincinnati for surgery, 8 appointments and 3 procedures is what our 'family vacation' has become. I hate this for myself, because I don't know how to be the best mommy always wanted to be for my girls. This disease and all its circumstances are robbing our family from so much. During days like today, it's hard to find the silver lining in life curve balls. It's hard to see "God's work" when there is a panicking 4 year old, understandably nervous and pleading for her parents not to take her to a hospital to be tortured, while her sister listens beside her, with her head down and tear filled eyes. It's hard to see God's plan ... it hurts.. it sucks. Today sucks.
