Surgery is scheduled.

We have decided to pursue all three procedures with our surgeon next Wednesday, December 4^th at St. Mary’s Hospital. He will be performing a scope around her abdominal cavity looking for any abnormalities around her bowels. The surgeon will then perform a nissen and tend to all tissue that is already destroyed from Eosinophilic Esophaghitis flares and persistent acid that has ruined the tissue around the bottom of her esophagus and top of her stomach. Finally he will place Annabelle’s new button / G-tube. The surgery should last a few hours, of which I fully plan to be a nervous wreck as I always am. We will have Annabelle at the hospital around 6:30a and the surgery should begin at 8am. The duration of her hospital stay is still not quite defined, it has a lot to do with Annabelle and how she is recovering and managing her pain, and also how competent we are at caring for the site and feeds with the new tube. At the very minimum, we will be in the hospital at least 2-3days. Our fingers are crossed the stay is short and we can come home safely and quickly.

Thanksgiving is almost here. This is the holiday that I have feared since we first received the EoE diagnosis. How am I going to sit at a table, around a flood of food and with a baby that cannot eat. My heart shatters at the thought. Right now, Annabelle has a handful of safe foods that I will prepare prior to joining family for Thanksgiving dinner, but I know Annabelle will not be pleased. She wants to eat what others are eating so badly. She begs and pleads to “Have-some?” and it kills me to tell a child “No sweety, you cannot eat this.” and watch her collapse and sob. What child BEGS for veggies and you have to deny them? Oiy. At least we do have a few foods that I can bring with us. A month ago, that wasn’t the case, so today I am so very grateful for what we do have.

We did more labs this week. Sweet Belle walked down the hall, standing two feet taller and quite pleased to be at the doctors office.. that was until I pointed her in the direction of the room where we draw labs and she stopped immediately and dropped her head. Oh my goodness, there are just no words to describe how fast my heart sank. She knew. She turned around and began the usual pleading to leave and tell me Noooo, nooo nooo mamama, bye bye, pleaseeeeeeeee! I hate, hate, hate having to ALWAYS be the bad guy and holding her down. The nurses are starting to truly feel the same way. They have seen Annabelle experience more than most adult ever do and it hurts them watching her constantly being poked and held down thru pain. They were so very attentive this time though. They had the distractions on tap and extra nurses nearby just to provide some entertainment. For the very, very, very first time, we got a stick on the first try. It was the fastest draw we have EVER done and I couldn’t have been so happy. This was hands down the best experience we’ve had to date of getting labs drawn. I was so grateful when we left. Not before seeing my Dr. Young though and giving her plenty hugs and Thank You’s as I always do.

The labs were to check her Amnio Acid levels to get an idea how her body is adjusting to not receiving amnio acids / protein any longer. I am SO very curious to see how she is doing and what the labwork shows. I will be shocked if the labs are not in our favor, I will be equally baffled if they are. Any way they come back, it will be interesting to see what Annabelle’s little body is doing and how it’s adjusting. Very soon, hopefully after these results are back, we can begin working with a dietician to give us some direction. It’s hard to find a dietician to work with when they don’t have a diagnosis or orders to follow. Since we’re not working with anyone, I am doing it all on my own. Fingers crossed it’s all in Annabelle’s favor. Because if you look at her, she looks like she is doing absolutely terrific to me! J Something is working!!