In Ellie’s own words

 I can’t write any of this as well as Ellie can, so I am going to copy and paste what she shared today:

Today we got my confirmed surgical plan. My surgery date is May 28th unless there is a cancellation. The plan is as follows: Modified Strong Procedure (this will correct my SMAS,) Pyloroplasty (this will correct my gastroparesis,) G tube or GJ tube (surgical feeding tube,) and Loop Ileostomy (ostomy bag.) It is an open surgery so he will correct anything that needs fixed and it will also make sure nothing happens that is not completely necessary. They said to plan for 7-10 days in the hospital which is subject to change but isn't too long of a stay considering it's four open abdominal surgeries. Since I only have one kidney, my options for pain management are very limited and I worry about post surgical pain. 

I have also had some issues with my central line dressing. On Saturday I noticed the edge was lifting and my skin had a very itchy reaction. I spoke with a friend who has experience with that happening and she recommended alternative dressings so that is what the home nurse brought today for the dressing change. It took almost two hours to get the old dressing off. The top layer came off easily with adhesive remover and left the bottom layer latched to my skin. It was extremely painful and caused my skin to start bubbling. My line also got twisted and was very painful when we set it to the correct side. My entire right arm has had surface pain that almost feels like a bruise. The same thing is happening to my other arm and legs but on a smaller scale. I have no idea what is causing this. We did end up getting the new dressing on (quite literally pain, sweat, and tears) and we used iodine and alcohol prep instead of chg. The dressing isn't as secure so we'll have to put the sleeve back on when we disconnect my line tonight.

It is also feeding tube awareness week. To my knowledge there are 6 types of feeding tubes (NG, ND, NJ, G, GJ, and J.) I have had both NG, ND (incidentally,) and NJ. During surgery I will have a G or GJ placed. (gastrojejunal) Before any of this I thought feeding tubes were just for people who are dying and thought they were a scary thing. 

I now know feeding tubes are not scary and can give you your life back when you can't be fed by any other means. I now use my central line for my nutrition but pray for the day we can utilize my digestive system for nutrients. 

Recently, a girl the same age as my brother passed away due to vascular compressions and other issues, one being SMAS. Her mom mentioned how hard they had to fight even for a diagnosis and how they assumed it was "in her head" for a long time. That is almost always mentioned in deaths from SMAS. That is sad and frankly sick. A girl with a bright future had her life stolen from her because when doctors run out of tools in their box, they will not admit they lack the knowledge for a diagnosis. Do better!

So, those were Ellie’s words. I am so proud of Ellie. Her knowledge , her refusal to give up, her faith. I admire her.