Monday, April 14, 2014

The OR is booked!

Tuesday, April 29th - 8:00am is our scheduled date for Annabelle's next round of biopsy's. Because the required prep work is unsafe for Annabelle, we choose not to do a Lower Endoscopy, we will only be doing the Upper. In the last 12 months, she has undergone a lower endoscopy and two upper endoscopy's.. this will be her fourth. Beyond those, she has been anesthetized four other times for other procedures. I don't know what it is about putting my daughter to sleep in a hospital, but it always, always makes me absolutely sick to my stomach. I absolutely hate, more than anything, handing my baby girl over to surgeons and being told to 'Relax in the waiting room', it's the very worst.

Because of Annabelle's history, there is too much risk in cutting off her feeds at midnight without any feeds until after the procedure is over. I've spoken with both the nurse and our doctor on how to make this as safe and as comfortable for Belle as possible. We've come up with a pretty good plan.

Her night time feed will begin at 7pm and run until 2am. We will flush and change her feed to clear liquids.
Clear liquids will be cut off at 4am and Annabelle will be unhooked from the pump for the rest of the night. (I'll vent her after she wakes in the morning)
We will arrive at the hospital by 6am = only 4 hours past the last feed, where we will be monitored. At that time, they will start an IV early (vs. in the OR after she's already unconscious.. it really stinks having to start an IV while she's awake. It isn't our first.. or our 10th, but it still isn't fun). The IV will continuously deliver sugar/fluids/etc until she is out of the OR and at that time, we can begin her true feeds.
Surgery is scheduled for 8am sharp. She's the first patient for the day so there shouldn't be much delay. It will also only be an Upper scope, so the procedure itself shouldn't take long at all. I am praying that she will be away from us no longer than an hour.

The purpose of this Endoscopy and Biopsy's are for nothing more than to evaluate the activity of Annabelle's, Eosinophilic Esophaghitis. In an effort to improve her eating / gaining weight, we have added so many foods into her diet, quite recklessly to be honest. When we received her diagnosis of EoE, the decision was made to remove all foods from her diet and immediately begin treating the damage within her GI system with heavy steroids, antibiotics, medications etc. Our next instructions were to determine any and every possible allergy Annabelle may have to foods, eliminate those from our "Food Wish List". We waited over 117 days, three scope's, and no food before our doctors determined it would be safe to attempt to introduce food again.

The rules when attempting to introduce food to a person diagnosed with such an unpredictable / dangerous auto-immune disease, is to take it slowwwlllyyyyyyy. And always within 100% control.

We haven't done that. At all. . . and it may very well come back to hurt us 10x worse than had we followed the rules from the beginning.

That being said, while an EoE reaction / flare is dangerous; survival and thriving was our primary concern. So we disregarded the dangers of EoE and moved forward to finding foods. We're now at a place that we really need to step back and ensure that what we've done, is safe to Annabelle. It's very hard to explain just how much of a gamble this is without understanding the 100% concept of how EoE works. Praying that we see zero Eosinophils on Annabelle's biopsy in two weeks, is bigger than finding a needle in a haystack. The odds are very much against us. But we're praying anyway!

Very, very high level background 

Eosinophilic Esophaghitis can be set off by absolutely anything. It could be a food that initiates the disease to attack, it could be a tiny ingredient in the food, it could even be something in the air that sets the disease off. There is no way to test for the things that instigate an EoE flare, the only way to test for a reaction is by performing biopsy's and looking for active Eosinophils within the GI system (where they should never be). When a reaction occurs, the body's immune system begins to attack itself, destroying the tissue within the esophagus / stomach, causing the esophagus to develop thickened tissue that tightens and begins to close the entire esophagus all together. It's a painful process, it causes the tissue to bleed, tear, become inflammed and making eating an extremely painful / impossible process.

The safest method of trialing is to add a food into the diet for a few weeks - biopsy the GI system - confirm everything is clean without any Eosinophils present. Consider that a Clean Trial and move on to add another food.

If we decided to add three foods for example. We would add all of them to the diet and then scope. If the biopsy's came back positive or there were signs within her GI system of an EoE reaction, that would be considered a 'Failed Trial'. The problem however, is that only 1 food could have been the culprit to the failed trial. The only way to determine which of the three is the problem is to treat the EoE reaction with steriods / meds. allow her GI system to recover and then add back ONE of the three foods from the trial. Re-scope/biopsy. If the results are passing, then add in the next, repeat until the offending food is identified. The problem with this method is that it requires so much O.R. / Anesthesia / Biopsy to identify which foods are safe. It's a terrible tease to the poor person being treated like a lab rat. One week they're eating three foods, the next week they have zero foods and then slowly get one back at a time.. literally waiting until the pain and suffering shows itself again to get the answers you're looking for. 

I know this is a lot of words in an attempt to explain something so complex - but once the understanding of how EoE behaves, the more you'll see our struggles and fears with this next scope.

In two weeks, we will be praying for zero Eosinophils. We are praying that every single food Annabelle has been eating, has not been a trigger food for EoE. If it has, we will be required to remove every food, treat the flare and all it's damage, and then re-introduce one food at a time and biopsy between each. Right now, her diet is absolutely huge - the odds are so very against us.

  • Broccoli 
  • Corn
  • Green Beans
  • Squash
  • Zuchini
  • Carrots
  • Onion
  • Tomato
  • Celery
  • Cabbage
  • Grapes
  • Strawberries
  • Orange
  • Apple
  • Blueberries
  • Fats - butter, oil

Until then, breakfast, lunch and dinner is served! We're going to spoil Annabelle's appetite at every chance until we're told otherwise. Fortunately this time though, our scope and biopsy results will be back AFTER Easter - therefore, we will actually try to enjoy the Easter Holiday this year and utilize our time in a church pew, praying for only good news and clean scope's :)

Friday, April 11, 2014

What a trooper!

This kid just doesn’t know how to stay down, even on her worst days. She has been a trooper all week since our ER visit Sunday. This morning was the most difficult day for Annabelle, she seemed to be the most verbal when waking up, crying and repeating over and over ‘Tubey hurts – tubey hurts – tubey hurts mommy!!!!” I think it’s a combination of both being sore (the bruising is starting to appear on the skins surface) and also granulation tissue that is growing larger and more irritable. I put medicine on the gtube site and that seemed to bring her a bit of comfort. I'm certain she will be feeling better very soon.

Our Gastrointestinal doctor called – she has concerns about the amount of coughing Annabelle is still doing, and I shared my continued concerns about her lack of appetite. We are not reaching ½ the diet requirements we were instructed to follow. I can’t make the child put food in her mouth. We are offering a massive variety of foods for her to eat, but even that is becoming SUCH an EoE threat. We cannot continue opening her diet only to appease the nutritionist calorie instructions… right now she is eating most all fruits, veggies, white bread and white pasta. Of course there are a couple things in there that we do eliminate because of known allergies such as all soy, grains, wheat, rice, potatoes, sweet potatoes, etc. Absolutely no protein, citric acid, no diary products etc. While that seems like a very small and safe combination of foods – that list of foods is an EoE nightmare awaiting to happen. I cannot tell you the gamble and trust we’ve put into this diet and have all the prayers in the world banking that these foods are proven to actually be safe to Annabelle from an EoE standpoint.

All that to say, the reason our GI called is that she wants an Endoscopy scheduled soon. I agreed. With lots of hesitation (because I am terrified to hear news I don’t want to hear), I agreed that it’s due time to move forward with more biopsy’s. I have a couple dates in mind for this procedure, hopefully if everything goes to plan, we can treat this as an outpatient surgery and be home that afternoon. There is so much that will go into this Endoscopy that will be different from all the others before.. there are a flood of unknowns and decisions we will have to make and I hate every single one of them. My biggest fear is this: In order to perform the Endoscopy, Annabelle cannot be fed for nearly 8hr before the surgery. The last trial (by accident, while we were in the MCV ER) Annabelle only made it 4+ hours before crashing bc she wasn’t fed. I am to not feed her for a full 8hr, and then subject her to anesthesia for an hour before we can feed her again. Dear Lord I am terrified.

All those decisions will be made in the near future and I’ll share soon when the surgery is schedule and which day to mark your calendars to flood Annabelle with your prayers.

Meanwhile, a small shipment from our terrible medical supplier was found. They shipped one random box of two cans of formula a week ago, to our OLD house that we sold and moved from in February. Fortunately, the new owners called to let me know they received a package and I picked it up in time to have more food to feed my kid. I am still in the process of switching to a new medical supplier, I have faith we will be much happier with them.

Annabelle is happy as a clam lately. She has truly been a flood of smiles every evening that I get home from work. She continuously asks, ‘mommy snuggle Annabelle’ (which brings up another topic our nurse has raised concerned about. Annabelle continuously references herself in 3rd person. Im not worried about this, as she just finally started talking but the nurse has a few concerns.. we will just keep working with her and if speech therapy is needed later to bring them back, then we will. But for now – she can be two :) and talk however silly she wants.) Her little personality is flooding in so many directions and she’s truly becoming the energy of the house. There isn’t any way we can avoid it – she’s loud as anything. She marches everywhere she walks. She speaks loud enough to hear her a mile away. She screams to the top of her lungs if she wants something. She laughs without a care in the world. 
She is a ball of energy the last several days. I am so blessed to watch it and be part of her living, laughing and having fun.... and I swear it has something to do with the weather and the sun finally coming out ;)

A few weeks ago AK and I took the girls to Bush Gardens. Their little world lit up. We learned quickly that we have not only 1 dare devil, but Annabelle is right on Mady’s heels for the roller coasters. Poor Belle still cannot ride many of the rides, but every single one that she can, she did. And screamed with enjoyment the entire time.

She wore out very, very quickly.. she rode in the stroller or I carried her for 90% of the day, but she smiled the entire time and that was worth it. We are learning how to live and enjoy life within the restrictions of her body’s demands. I am learning her threshold of how long she can run and play before hitting a wall of sheer exhaustion vs lethargic and barely conscious. We are gauging these things with much more confidence and ease. Annabelle’s communication about how she’s feeling helps tremendously. She can tell us if she doesn’t feel good, if she is tired, if her tubey hurts, if she needs to vent/make bubbles, hungry, thirsty etc. These are all things that she used to only communicate thru screams and whimpering, I am so very grateful she can help us navigate her pains now and AK and I are not left in the dark on how to help our kiddo thru difficult times.

Life is good. It isn’t great by any means, but we’re blessed beyond words.We are moving along and starting to wear more smiles than tears than we have over the last year. I am grateful for those. Life ahead looks more promising, with it’s own share of worries and fears but we will, without a doubt make it thru each of them. God is good. 

Wednesday, April 9, 2014

Easy G-tube change; lands us in the hospital.

About two weeks ago as I was unpacking another box of supplies, I noticed we were really starting to build a pile of Mic-key gtube buttons. Then it hit me: crap! I was supposed to change Annabelle's tube out.... last month! Whoops.

From that moment I panicked. I got so nervous so fast. I began texting my friend for her experience changing the tube out at home alone. I started watching YouTube videos and even considered making a bogus appt with the surgeons office just so I could do it while I was there with the nurse again. I'm a nervous wreck about this procedure and it isn't like I haven't done it before! I changed her tube out myself in January. But I was in the hospital and had the coaching of the nurse beside me. Suddenly when you're at home, not near a hospital - your confidence seems to diminish quickly. 

Annabelle's tube has been giving us trouble lately, it gets clogged when venting more often than it doesn't. It's becoming more frustrating and I knew I needed to get over myself and just change the stupid tube.

Sunday evening, while dinner was on the grill, I collected all the supply, sent Mady outside to ride her bike and AK and I scrubbed up. I knew once the wheels were in motion, I would go into my typical nurse-mom autopilot and everything would be fine. But I couldn't swallow over the fear of the just-in-case-it-doesn't. The only thing playing over and over in my head is our surgeon preaching to me: "The stoma (hole) will close within 20m once the tube is out. If it comes out  by accident or during a change, you only have minutes to get it back in or go to the nearest hospital immediately. If you can't get it back in, surgery will have to be done to reopen the hole."

Game Face On
As always, I kissed her little forehead and said a quick prayer. Deflated the balloon. Reached with my right hand on the tube and left hand on her tummy, and pulled. During the second tug is when I felt a flood of fear surge thru my body, 'something's not right...' She cried as soon as the tube was out. I wiped her tummy off from the little blood and tummy yuckies, looked into the stoma and recognized it appeared very different than it did before. I didn't want to waste time though and grabbed our new Mic-key button and began attempting to put it in. A brick wall. I wiggled it around slowly, a little harder.. Nothing but hardness. Annabelle was screaming and I knew that would only make it worse or more difficult. We calmed her down and I looked up at AK with a blanket of fear across my face "I can't find it... I don't know what to do!" I tried for another minute longer and then triple checked the tube size to make sure they were indeed the same sizes. I handed it to AK and we switched positions. I held Annabelle down while he attempted to put it in.. The tube kept buckling from the pressure of pushing and moving but the hole just wasn't anywhere to be found. Finally he pulled the new tube up and it was covered in blood all over. I called it, "Were done. Call the hospital we need to go, now." I covered her tummy with a stack of gauze and held tight as he scooped her up like a baby and headed towards the van. On the way to the hospital I called the ER to let them know we were in route and the situation, everything was set and seemed fine.

On arrival... ugh, complete different story. AK dropped me off at the door with Belle and her box of tube and supplies in hand. I walked thru the doors to greet two women at the front desk chatting. "Hi, this is Annabelle Bishop, I've already called and spoke with ----- , they're expecting me". She laughs with her friend to finish their conversation and asked me to sign in on the clipboard. I looked at her with crossed eyes. Im carrying a 30lb kid like a baby so she remains on her back. She's dripping gastric fluids / blood on the floor from under my hand and i'm juggling two boxes. WHERE she thought this third arm would come from, I don't know. I repeated our name and information again and stood there. She said someone would be with me shortly. I responded, "You mean, immediately?" I stepped away and AK joined us in the waiting room. I paced around for several seconds and walked back to the desk.

"Mam, I cannot wait - you don't understand. We need to see someone right away"

She called the head nurse and they instructed us to go thru triage, but we would have to wait our turn because someone else was being assessed already. I lost it.

"Let me speak with the attending right now. I am sorry to act this way, but this is my baby. This tube has been out for nearly 30m and our chances of getting it back in without surgery are growing more and more slim by the seconds... I need to see someone NOW!"

I turned around with tears in my eyes and arms that felt like jello from shaking and holding my traumatized child. A lady that was also checking herself in, signing the clipboard, looked up at me with her hand in the air. She said loudly "You do NOT apologize to her my child, you demand what you need for your baby girl! This is a hospital and she should have reacted appropriately from the beginning! Do not apologize. God Bless you." I smiled with tears.

Finally a nurse slowly walked thru the door, visibly irritated at my demands and asked I follow her.... into triage. She asked that I sit, and I stood. She asked why Annabelle has a tube. "She is diagnosed with Eosinophilic Esophaghitis and has an undiagnosed intolerance / problem with protein. She is dependent on Elecare for most all her nutrition." The nurses response, "Well, she looks healthy to me." and just stared. "Thank you, it took a lot of work to get here... what else do we need to do in triage before we can get the tube back in place?" She then asked "Well.. is the tube in or out right now?" - "ITS OUT! I have it in the box." She then wanted to know who put the tube in, in the first place. "The surgeon!" Oh God, you cannot imagine the frustration. She could tell I was upset and finally changed her tune when she realized that under Annabelle's shirt, was a wide open hole into her stomach and this wasn't time to play around. Finally. We were escorted by another nurse to a room and AK stayed in triage to give information.

The doctor quickly joined us, and immediately said "Well, do we have the tube? I haven't put one of these back in yet, but we'll see what happens." WTF?! He grabbed the tube and assessed her tummy. I grabbed his wrist and asked "Don't you want some lubrication first?" the suggestion startled him and he smiled at me, 'thank you mom' and from there we worked together. I looked down before he inserted the tube. Her hole looked almost completely closed. I just knew it was going to be bad. The time was nearly 50min from the time we removed her gtube at home.

The pain... oh my god, the pain was unimaginable. This experience was another that will forever be scarred into my memory. I swear he nearly put his fist thru her stomach. The pain literally continued taking her breath away and making her gasp between screaming and arching her body to escape. We held her down for far longer than I believed possible, but thankfully.. it did go back in. We inflated the balloon to keep it in place and she screamed again. The torture was over. I wiped up all the blood and lubrication and pulled her shirt back down as requested (be Belle). We paced the room over and over and over as she moaned and stared at the walls.  
Que the parent guilt. 
You could read it across both AK and my face.. how did we let this happen? Why couldn't we do this our self at home? Why did it come to this painful ER visit for something that was supposed to be so easy, quick and routine?

About an hour or so later we were taken to xray for a contrast scan to confirm placement of the tube into her stomach. Everything indicated we were in the right place and we finally made it home. Exhausted and with the heaviest heart.

Annabelle is quite bruised. Her stomach is very tender to the touch and I am certain this incident will leave us with floods of granulation tissue in the near future. Meanwhile, the recovery has simply only involved a bit of Tylenol/Motrin for pain relief, managing temperature spikes and diarrhea. I spoke with our doctor when following up, the next day. She indicated what happened and explained to me why we had the difficulty placing the new tube. Annabelle has another bruise, located about 8pm from her stoma. That happened one day when she was running and I had JUST unhooked her feed without removing her extension. She ran away from me and the extension (tube that connects to her stomach and heads down towards her knees), somehow got snagged and pulled tightly enough to drop her to her knees in screaming pain. Right away we saw the stomach turn red from where the balloon inside, pulled aggressively hard inside her stomach. She bruised herself from that accident inside her stomach... this is called a Hematoma and the result feels like a solid hard rock below the skins surface. When I pulled the original tube out, I felt something snag it like a pop and then the tube came out. Apparently when that happened, the hematoma shifted her stomach in a direction that prevented the two holes from lining up any longer. That's why when we tried inserting the tube, it felt like we were hitting a brick wall... we were - the hematoma. When the ER doctor accomplished getting the tube in, he managed to scoop deeply around her stomach and around that hematoma which allowed him to find the hole. In retrospect. I should have anticipated this .. I will continue to beat myself up for allowing this to happen to Annabelle. It's a terrible human / mommy / protective mama bear thing that I always seem to do. I promise to her, this won't happen again if I can ever prevent it.I feel so guilty. I just should have known....

We still have not received any formula. The phone battles continue as I march my way up the ladders to demand explanations for why our medical supplier is determined to not do their job and send our supplies. Every time you get someone on the phone, they give a different story. AK called Monday and politely asked where our child's food was, it's now been nearly a month. They assured him it was shipped and should arrive within the next day or two. Friday I was furious. I am running out of food for my child. We are paying out of pocket left and right for formula from random strangers and begging from generous people that also use this formula to donate what they have until we can pay them back. People are shipping us cans as we parade Medical Supply Exchange Forums and beg. This is absolutely ridiculous that were playing this game with a supplier. I was finally told that the hold was based on insurance denial once again. I spent days on the phone with both Medicaid and our Primary Insurance Company, United Healthcare. No one can clarify who is the responsible party to handle this formula prescription. I'm furious - beyond frustrated and exhausted from this battle that should never even be taking place from the beginning. I contacted a different medical supplier last week and poured my heart over the phone and explained our situation. Were dropping our current supplier and moving all our needs to a different company. They will, without a doubt, save our life moving forward. Granted, it's going to take much leg work, exchanging supplies that were renting (IV poles, Pumps etc) and gaining a new suppliers different equipment and adjusting to the small learning curve. Hopefully, fingers crossed, we can make this change swiftly and efficiently and hopefully have Annabelle's formula in hand as soon as possible! I'll keep you updated.

Thursday, April 3, 2014

1 Year After Diagnosis

I remember the day Annabelle was diagnosed like it was yesterday. I remember the chilly cold morning, I remember the nauseating anticipation of the surgeon calling me. I remember the sleepless nights leading up to that phone call. I knew for certain that if we were told our daughter had Eosinophilic Esophaghitis, then our life of happiness as we knew it, would be over.

A year later I sit and reflect to that day. I want to shake myself so badly for those wasted days of assuming only the worst. I wish more than anything in this world I could go back to myself the days prior to that life-changing phone call and soak in the feeling of still having hope. To have another moment of belief that perhaps Annabelle wouldn’t be labeled with this disease.

I wish I could go back to the day we heard those words from the GI and tell myself ‘this isn’t the worst.. prepare yourself mama, the ride is about to get more bumpy and windy than you ever thought..’ While that doesn’t sound encouraging – I wish I could have opened my eyes a bit wider than they were that day. My heart closed tight and my mind hid under a rock of disbelief. I convinced myself it couldn’t get any worse. That wrongful assumption led me to continuously get knocked down with every single curve-ball Annabelle has thrown over the last year.  
Somehow we’ve pushed thru the fears, fought back the tears, ignored the pain and managed to wear smiles while continuing to raise our family. We have no choice but to continue moving forward and praying harder and harder when things seem to be the most out of our control. This past year has taught our family more than we ever imagined. It’s taught us about love, faith, frustration and patience. It’s taught both our daughters to trust and support one another, to love their mommy and daddy individually and to trust in God to keep our family safe. Annabelle’s strength and journey has taught both our children and friends and family that we are not all the same, kids/babies get very sick, health is something to be thankful for and sometimes prayers provide more answers than doctors do.

Here is a recap of our last year. There were some amazing good times and also its share of hard times. There were many moments when Annabelle spiraled away from us so quickly, we feared the worst. I am blessed we have made it this far.

Warning: This video does share graphic images and painful videos, please watch at your own discretion.  

Tuesday, April 1, 2014

The things we do to feed our children

There’s finally a break in the clouds. Annabelle seems to be feeling much better this past weekend than she has for the last several. We had a hurdle last week with the medical supplier that once again.. didn’t ship our new formula. I thought I had one extra can to carry us until Thursday when the shipment was to arrive and miscounted. AK called in a panic Wednesday evening and asked where the extra formula was.. when we realized we were out – we quickly moved into Parenting-Crazy-Annabelle-Survival Mode. I contacted the one person I knew in VA that also uses Elecare and drove an hour to her house to beg for 1 can.. that left her with only 2 cans for her own son. Oh the things we do for our children. I got home from work that night after running the interstates, a little after 9pm. I was exhausted, AK was beat, but we both high-fived that we’ve jumped another hurdle. Thursday was spent all day on the phone calling every Lincare office and leaving more voicemails than you can imagine for someone to explain to me where my childs formula was. I was told on numerous calls “Mrs. Bishop, please don’t worry – someone will call you back” … it’s been hours, I left voicemails the night before, I began calling again at 7am, they promised a return call by noon… it’s now after 3pm. I was done.

“Im sorry mam. Do you have kids? Are you going to feed them tonight? Because im NOT unless someone finds my childs FOOD!” I finally worked my way up the ladder to the corporate office and demanded an answer before hanging up the phone. The answer was: The dietician that was to place my order, was supposed to call me because the prescription was written wrong two weeks ago.. she hasn’t been in the office therefore she never called to deliver that message. Which resulted in our formula never even getting ordered. Fancy, huh? We’re switching suppliers immediately.

She still doesn’t have much of an appetite. I don’t know how to make a kiddo eat when she isn’t hungry. She isn’t even being picky – she just will no eat, regardless what I try to serve her. The only thing that I have found to be working are salted corn chips. Weird, I know. She likes them because they’re crunchy and she can carry them around in her bowl.. but that isn’t a meal by any means. She doesn’t want much to do with fruits, veggies, pastas, toast, or even many juices anymore. I don’t know whats going on.. but I can start to see she’s losing weight. I don’t know if she’s lost more since our last visit or not.. but she is definitely thinning out.

Nosebleeds are new. She is having small nosebleeds almost daily for over a week now. Sometimes they barely last long enough to make a messy face and stain a white shirt. Other times it takes a few minutes to make them stop. But they are new. The weather is changing and I wonder if that has anything to do with it..

I did make contact with the GI again last week and asked to make a change. I really am not happy with the Prilosec compounded prescription we are now on. Annabelle has been on compounded Prevacid/Omeprazole since she was an infant and it’s always worked well.. our last inpatient at MCV is when the prescription was changed by the doctor on the floor. I was told that we had maxed out the dosage for age/weight with the Omeprazole and we needed to switch to a new PPI but that isn’t the case. I asked our new GI last week to change back and she agreed with the change. Of course when she called it in – it has become a problem because we already have a PPI that was filled with the compounding pharmacy this month and insurance doesn’t want to cover a second. Im dealing with that currently, but hopefully once I have it Annabelle will do much better from that perspective.

Ashley Fun Fact: I didn’t know reflux would still be an issue / problem after a Nissen is surgically performed. I truly believed that the Nissen would prevent acid reflux and the discomfort from happening any more. I was wrong to assume that..

Besides that little update, things are going ok. Annabelle is becoming more of a mommys girl than daddys girl lately. She asks to cuddle more frequently and when she isn’t feeling well, she wants to be held and cuddle (can we say, Ohhhh my aching back?! She isn’t a very light girl! lol). When she does have energy and wants to play, she is sharing many smiles, giggles, and fights with her big sissy. For those days, I am always grateful.

Wednesday, March 26, 2014

Three weeks and still going down..

I hate to say, but we expected this to happen.
Annabelle isn’t improving, she’s declining and we are struggling to determine an explanation for it. There are so many variables involved that could explain her current condition that’s fogging our judgement on what is to blame. I hate that we began a new formula during a time she was possibly sick. I hate, hate, hate that. I expressed my concern when we made the change to Elecare, that this isn’t a very responsible time to do this but I also understood why it was so important to switch so quickly.

Annabelle’s cough hasn’t stopped, we’re now at week three of a persistent cough that has turned to choking and retching (trying to vomit). Her temperate has been fluctuating more frequently, and when it does, it happens very rapidly. I am very reluctant to offer any medication beyond her prescription meds, in fear it will irritate her temperatures and their erratic movement. She’s becoming more and more lethargic. She is laying down more frequently – laying on the couch/bed, not to be confused with sleeping, because that isn’t happening. She isn’t resting well. Her nights are completely variable if she is up crying in pain, screaming for help, moaning because she’s uncomfortable or if she sleeps the night thru and is groggy when woken in the morning. 

Madelynne’s birthday was this past weekend and we all had a wonderful time. We started Friday with Mady's spa day and Annabelle enjoyed herself a haircut beside her sissy. Saturday was party day! Annabelle however arrived at the party and persistently asked to go ‘Na-night’, AK laid her in the bed and she slept most the party away. She did wake towards the end of the party and tried playing for a short bit but it didn’t last as usual. She retreated back to anyone's arms that were willing to hold her and snuggled as she watched the party carry on. That evening she spent her time on the couch with no energy and cuddling with her ne-naw (my mom). Life moves on around Annabelle. She is the elephant in the room and we all watch with worry and pouring silent prayers as we see this beautiful two-year old unable to live the life she deserves. I live for the moments of watching her smile, laugh, dance around and have fun – but they never last.. not anymore at least. She only has enough stamina to play for a maximum of 30-45min and then spends the next several hours depleted of all energy and terribly uncomfortable. 

Sunday I made sure Annabelle stayed home with a big set of plans: rest, rest, rest. Do nothing but rest and sleep the day away. She did just that. 

Monday unfortunately wasn’t a better day. While I spent the weekend with silent worry while watching my daughter continue to decline, I wanted another perspective.. I wanted our nurse to spend some time with her, I wanted a second opinion, a skilled second opinion from someone who also spends a lot of time with Annabelle. It wasn’t a very good report. I missed several phone calls from our nurse that afternoon while I was at work, each message explained that Annabelle isn’t well. She’s very uncomfortable, nauseated, lethargic and even her stats are declining. We began a Pedialyte drip thru her tube Monday afternoon and have continued to push fluids by tube since she will not drink much of anything on her own. Her appetite is practically gone. We were challenged with the goal of three meals a day and two snacks to ensure Belle gets the calories / nutrients she needs but we haven’t been able to make that goal yet. Saturday she ate maybe a handful of food and hasn’t eaten anything really since. Last night I came home with a big, big surprise – I bought her some safe chips and prayed it would trick her into eating something. It worked. She ate about 4-5 of the chips and even a few bites of steamed veggies.. not much by any means but it was something, and for that I pray this is the beginning of a turn for the better. She drank maybe a cup and a half of fluid on her own yesterday, so that challenge is raised to two cups today. Fingers crossed!

We just don’t know what’s wrong. With her auto-immune disease in mind, part of me wonders if she’s just trying to recover from a virus she may have caught, or if she’s fighting a cold. Annabelle takes significantly longer than most others to fight anything that requires her immune system to work hard. My gut on the other hand has a really hard time not associating this with Elecare. I have read this chapter before, I’ve seen this side of my daughter far longer than I ever wished and I know just the moment when this behavior ended – it ended when we stopped feeding her Elecare. I have been told by so many Dieticians, nutritionists and doctors that Elecare is the safest nutrition for her and these side effects should not be associated with the formula. But I have a really hard time not making this connection. I want a REALISTIC explanation for why my child is so darn miserable!

I’ve left messages with our new GI for guidance, I wanted to wait as long as I could to eliminate any other variables that could explain why she’s struggling but at this point I think we’ve hit our threshold. Hopefully we make headway towards helping Belle feel better soon.I have no idea what that may involve, but I know the road we're on isn't working... here we go again - raising, caring and loving a child, completely blind and praying we don't do anything wrong. 

Prayers for answers ... please please please.