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 :)