4/14 PM: We appreciate the messages, donations to COTA for Emmy, and shirt purchases we have received over the past few weeks. Please keep them coming!
We wanted to share what our path forward will be to get us to her surgery in June. Unfortunately, Friday was Emmy’s last day of school for the year. She loves school and is sad to have to say “see ya later” to her classmates, teachers, and friends 6 weeks early. We have a wonderful friend and neighbor who is going to help home school Emmy for the remainder of the year. Big thanks to our village for showing up and helping in so many different ways.
Yesterday, we were admitted to Children’s Health in Dallas (where her pancreatic specialist is located) for placement of a “nose tube” (NJ tube). Because of the extent of these last few pancreatitis episode, the proximity of this last one to her surgery date, and the pain she is still experiencing especially after eating, her medical team has decided the best path forward is to place a NJ feeding tube that goes from her nose into the jejunum portion of her intestines (middle portion, past the pancreas) and feed her 100% via the tube for the next 8 weeks to give her pancreas a break. This break will give it time for the inflammation to decrease, prevent new episodes from happening, help control some of severe pain she’s been in and allow for the least amount of risk come surgery day. This break means she won’t be eating “regular” food by mouth again until after surgery. For a girl who LOVES to eat, this is feeling like a really big challenge to face.
This morning, the tube was placed in IR using fluoroscopy (x-ray) to ensure it was placed far enough down in her intestines. She has been very anxious and scared for the placement of the tube but did such an amazing job. She was given some meds to help calm her for placement and it did its job. She’s been so brave and so strong. Jarret and I’s heart breaks to watch her go through it all but also beams with pride that we get to be her Mommy and Daddy and be by her side on this journey. We will hopefully be heading home tomorrow afternoon. Once we are home, we will work to move her feeding schedule from 24hr/day to a faster rate so she can get the same total volume in 16hr a day so she can have an 8 hour break from being connected to something. She has requested a 1-9pm break so it can match her brace breaks each day!! What a free few hours those will feel like.
Jarret and I will be doing the tube education/training tomorrow with the home health company and once we get all the supplies set up for delivery, we will get to head home! Wish us luck for a smooth process as sometimes, it can be a long frustrating process to get home with a new feeding tube!
Emmy could use some love and encouragement as she faces these next few weeks and find her new routine once we get back home. I have no doubt she will conquer it all with humor and joy like she’s always does, but I also know she is feeling very scared and anxious about what life “with a tube” is going to be like. 
4/15 AM Update: Unfortunately Emmy vomited up her tube last night. 
We are hoping to be able to get it replaced down in IR again today. We will see if they have time to fit us in.
4/15 PM Update: “Nelly 2.0” was successfully placed today and Em’s did great again! She’s in much higher spirits tonight. Love to see her happy smile back!!
4/16 update: Today we got the final word that insurance doesn’t cover the tube feeds or supplies for home care. Gut wrenching but we will do what we need to do for our girl. Hoping to head home tomorrow.
