Saturday, August 30, 2014

When it rains, it pours


The last few weeks have been a whirlwind for Annabelle and our family. As always, when we are having a tough time or get bad news, it takes me a while to absorb everything before I can collect words to share them to the world. Thank you sincerely for being patient and keeping Annabelle in your prayers, even without prompt updates, it means the world to us.

During the past few weeks, Annabelle's pain and appetite has gotten increasingly worse. We were scheduled to meet with our doctor and get clearance for an upper endoscopy and biopsy's, while there our doctor was fortunate/unfortunate enough to hear how miserable Annabelle felt and her gross coughing and choking. She listened for quite a while and reassured us that the coughing was not from any respiratory or her lungs, it has to be GI related. This isn't surprising to any of us since Annabelle has been on straight prednisone, twice a day for over 5 months now. Long term steroid use poses many complications,one of which is steroid induced reflux, which is likely what were seeing right now. Annabelle does take a compounded acid blocker twice x day to alleviate reflux, in addition to having a nissen (stomach / esophagus tied snug to prevent reflux from emerging from her stomach to throat). Still, the coughing has been lingering for over 4 weeks and is quite persistent. She's uncomfortable, exhausted and overall just frustrated at the constant battle to get rest without barking all night. Hopefully our next scope will show us something.


After our appointment, we performed a few labs. We have been so fortunate to not have had to draw lab work for a couple months now! Unbelievable!! Entering the lab to have her blood drawn however, was not a distant memory. Annabelle knew immediately what that small white room meant and she melted down. I sat in the chair and the lab tech did an incredible job drawing the labs. She got Annabelle on the first stick (!!!!) but it still didn't mean there weren't a flood of tears and PLEADING to go home, "mommy stop! please! go home, mommy, please!" :( It was over before we knew it and I left Annabelle with our nurse at the doctors office to head home while I flew to work myself.


That evening on the way home, I got a call from the doctors office. The labwork they performed wasn't complete. They accidentally used the wrong tubes when collecting some of her tests and needed us to return to have the labs repeated. My heart sank. There isn't much worse than having to hold your sweet baby down for needles, but to unnecessarily have to do it all over again because of someone's mistake, that really bites. I know the sweet lab tech felt equally horrible - I'm certain she didn't want to stick a baby anymore than I didn't want my baby in pain again, but the situation itself was frustrating. While the labs were important, I knew there wasn't any way I would be able to return the next day for the labs, and I didn't want Annabelle stuck in the same place just a day later - I know that hurts. I agreed to bring her back, but it wouldn't be until the following week. I felt terrible for Annabelle and looked at her pitiful eyes in the rear-view mirror, 'Belle, do you want your toes painted pretty?' She piped up quickly and said 'Yes!!! Yes please!'. She's been pointing at her chipped nail polish for days saying her toes have boo-boo's and I haven
't gotten around to painting them. AK was out with Mady for the evening so I decided Belle and I would take our own girls night and have our nails painted. She picked the color for both of us..

A few evenings later, the labwork we were able to get, began to come in... to our surprise (or no surprise at all, really), multiple tests came back quite alarming. The labs kept coming in over the next day and our doctor and I spoke numerous times about what these labs all mean. For one, her Eosinophil count was as high, if not higher now than it's ever been. Which is beyond frustrating considering we've had this kid on prednisone, little food and kept her in a bubble for 5 months, only to find out we haven't made any progress in regaining control of this disease at all. I think deep down I knew Annabelle wasn't well and we haven't been very successful in bringing the last EoE relapse into remission - but I couldn't have imagined even her labwork would look this discouraging.

Other tests came back alarming high for multiple auto-immune indicators, not associated with Eosinophilic Esophaghitis. Our doctor then mentioned a plausible cause: Lupus. My mind remained confused as she talked me thru it and we began reading and researching together. Lupus is a connective tissue disease and is often times overlooked/undiagnosed because of Eosinophilic Esophaghitis! I continued my research and heavily believe this has the potential to be our root, global diagnosis. With the remaining of the labs filtering in day by day, each and every one of them continued to validate Lupus as a likely explanation. http://emedicine.medscape.com/article/1008066-overview
We are working ferociously to move to a specialty hospital that has a team specifically  for children with multiple auto immune symptoms and diagnosis but are living with little quality of life due to the absence of their global-root diagnosis. That's where we need to be. And we are doing everything we possibly can to get there!

This week, while school shopping for Annabelle's sissy, we decided to grab dinner before going home. Annabelle had been in a great mood all evening. The time was late, it was around 730p and suddenly, at the dinner table in a restaurant, everything changed.
Annabelle began saying her ear hurts, she then began crying and throwing a fit. Within minutes she wanted to lay down and then minutes later crying again. An ear infection is something every parent has dealt with 239016036 times and can pretty much diagnose immediately without the use of any doctor tools or payment of a co-pay. But something about the escalation of how quickly Annabelle went from smiling and playing, to laying in the dinner booth and bawling crying, made my mind race. I got up from the table and kissed my family goodbye before dinner was finished.. I curled Annabelle in my arms and power-walked her to the car. We live just minutes from a KidMed and a hospital. I decided we would visit the KidMed to at least be in a safe place if something took a turn for the worse. I drove, in complete silence and gently singing to Annabelle between promises "We will be there soon sweety! We're almost there! I'm so sorry your ear hurts, just another few minutes!" Annabelle screamed. She screamed and screamed and cried her eyes out. We got to KidMed where I carried a limp and moaning little girl thru the doors and was greeted with more tedious paperwork and insurance questions than I see at DMV! I was heartbroken for my daughter as she waited in pain with tears streaming down her face while I filled out paperwork... bad policy there kidmed - if a child is in pain, let's address that first and paperwork later - or at least allow us to go to our room and begin the doctor process while I fill out the paperwork!

 Once we were finally in our room, the questions began. "Alright, so how is ms. annabelle, does she have any allergies, unusual medical history or any past surgeries?" - ughhhhhhhhhhhhh, where is my binder when I need it?! I have all those questions answered on pre-printed copies that I can just hand the nurse when we see a new doctor/specialist/hospital. I smiled politely, as I always do and asked sincerely "her medical history is miles long, it would be easiest if I tell you her drug allergies and only tell you what foods she CAN eat. Here are her surgeries and confirmed diagnosis.. I know you're going to want details on all this, but my daughter is in pain - can we just start with that until the doctor comes in and we can begin some pain meds and I promise I'll answer the rest of the questions again when I repeat all of this for the doctor." She smiled and thanked me for my honesty and said "thats a great plan - lets get this down in 30 seconds and I'll grab our doctor mom". whew.




She definitely had an ear infection - but that became the least of our concerns when Annabelle began shivering and instantly stopped crying while staring at the wall. Her temperature just moments before was 97.3, she was now drenched in sweat and silent. The doctor felt her all over and asked if this was common. Annabelle hasn't been in acute pain like this for quite some time, nor has she ever had an ear infection - but when she is in pain or her immune system is required to fight something, any and all symptoms and her little body's reaction is in the air as to what it's going to do. The only thing we can do to calm it is to relieve the pain and calm whatever is challenging her immune system. Without a doubt it isn't an immediate fix, but it will at least usually calm the insane rapid things her body is and will continue to do until she's out of pain. I asked for Motrin, dye-free and they didn't have any. The doctor rushed the nurse to end the questionnaire and she handed me my paperwork - the antibiotic was already called in to our pharmacy but I needed to get home to get our safe pain reliever. We live only a few miles away so I rushed to leave.

The moment we pulled out of the parking lot, Annabelle began crying and pleading to make the boo-boo go away. She would stop between cries and go silent.. my heart stopped every time. Finally, about a mile or so from the house, she let out the worst pain scream I've heard in a long time. I have no idea what caused her so much pain to scream the way she did but it didn't stop. She began retching and vomiting, between every moment she could breathe from vomiting, she would scream to the top of her lungs. I couldn't get in our driveway fast enough. AK met me in the garage when we pulled up and I yelled for him to get her extension and a syringe FAST! She couldn't stop retching and I just knew it was her nissen that was tearing or causing her the pain. The pain screams correlated when her body would begin to heave to attempt to vomit. I carried her into the house where Mady was somehow still awake and scared to death when she saw her sissy in the condition she was... We hooked her extension and a 60cc syringe to her gtube and it immediately begin to relieve of pressure and pouring gastric juices out of her stomach in a violent matter. Soon, she was calmed again. Sitting on my kitchen counter covered in tears, saliva, stomach bile and the most pale grey face I've ever seen. I flushed her tube and gave her Motrin, carried her upstairs to wipe her down and put some jammies on. (a bath during times when her temperature is fluctuating, is the worst thing to do ever. Her body cannot regulate it being warm from the bath water to cold when she gets out - that's playing with fire. So during times like this, we just wipe down with some warmed soapy wash clothes and try to look past the smell of stomach bile until a bath is safe, ugh).

Annabelle laid in my bed with me while AK went to the pharmacy to pickup the prescription. She was silent and so still. Her temperature was moving rapidly, up and down. A couple minutes laying down on her side, facing the wall away from me, she began having tremors. They weren't nearly as violent as the seizures/tremors she had last year, but they were present and equally as scary. It stopped and Annabelle exhaled as if it just took every bit of strength out of her. She wouldn't talk or cry, she wouldn't hold my hand - she just stared at the wall with a terrifying blank stare. Then it happened again, and once again. I watched the clock and my heart raced - suddenly 'I' was scared and didn't want to be home with her alone. I watched the minutes tick by impatiently and finally he was home. With the meds and wore an equally worried frown when he saw Annabelle. Both our minds were racing I know, but we remained completely silent. She fell asleep and we exhaled. Her temperatures calmed down and the tremors stopped. Around 330am she woke in extreme pain again but it was short lived once we were able to get her more medicine. Her feeds weren't run at night because I was so worried she would aspirate and more importantly, she would try vomiting and not be able to retain the pain meds that she desperately needed.

The next day, our nurse spoiled Annabelle rotten, as she does most days :) She's a god-send to our family. I cannot take anymore time off from work but I knew we needed to get the rest of our labs done. I asked our nurse if she felt comfortable taking Annabelle alone without me. Of course that wasn't a problem for a nurse, but it absolutely crushed my mama heart. Annabelle has never had any labs, tests or procedures performed without me there. Im certain this is probably more about me than Annabelle so I decided it would reasonable to miss this round of labs and have our nurse do them so I wouldn't miss work. As soon as they were over, I called our nurse and asked how it went - with a low tone she said, "She cried and screamed for you the entire time Ashley. She just kept telling me that she only wanted her mommy.. she didn't do so good, but we did get all the bloodwork we needed and she's resting comfortably now." My heart was crushed. The rest of the day was difficult and I found myself buried at my desk with tears pouring in my lap. The mommy pain to know you need to be with your baby but need to be at work is the absolute worst pull of any feeling in this world. Absolutely no decision is right and everyone loses. These are the times when being a special needs parent can / will and DOES break you. I just hope this spiral is short lived and I can get back to my typical 'fake-the-smile' self soon.. but right now, my heart is shattered.

Annabelle still has very, very little appetite. Her fevers are completely gone and the pain is over of course. The coughing hasn't gotten any better, but our labwork is all back and we have everything we need to move forward, cleared for surgery. We are scheduled for September 16th at 7am. Four days before Annabelle's birthday :( Happy 3rd Birthday kiddo!





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