70

 70 days. 70 days doesn’t sound like much when you’re waiting for something fun. Or you can do fun things while you wait. It seems like an eternity for Ellie, as her surgery is 70 days away. As a mother, it is so hard not to be able to fix things for Ellie. A friend, who is going through a lot of stress and difficult life situations said to me today “I wish my life could just be normal”. I fully understand this statement in so many ways. On the other hand , I read what Ellie writes and shares on social media and I know that comes out of her trials. Her faith, her determination, her character… all have been shaped by these horrible illnesses. I am so incredibly proud of my daughter. She may not be winning awards, or winning a race. She may not be working or driving or going to prom. But I watch her day in and day out fighting a battle most of us couldn’t fathom in our worst nightmares. 

Ellie is really suffering. When I say I am DONE with pediatric specialists, I really mean it. Cleveland clinic, or Pittsburgh children’s , they’re all the same to me. They treat a handful of common childhood conditions and that’s it. No one goes out of their way to find solutions or help. I swear I could scream when I think about it. “Take miralax. Here’s a low grade antibiotic that will help. Here’s some medicine. Ok here’s more medicine. Oh none of that is helping? I guess it’s her anxiety. See a psychiatrist”. They will literally just let you die without giving you answers. 

One thing I have learned is DO NOT TRUST DOCTORS. Especially pediatric specialists. Get 10 more opinions if you have to. It’s probably not anxiety. There’s also no such thing as “stomach migraines” Ellie has been a better doctor to herself than anyone else has at this point. 

So here we are. 70 days until surgery. Ellie is constantly vomiting. Constant nausea. Full of fluid. Miserable. In pain. Can’t sleep. Can’t eat or drink. I took her to women’s ministry last week and she was so wiped out and sick afterwards. 

We are pretty sure Ellie’s TPN calculations are way off. Ellie has called pharmacists and nurses. They all agree. Using the formula that doctors use for TPN, Ellie figured out she’s getting what is meant for a 6 feet tall 200 lb man. Proper TPN calculations are critical. It can shut your organs down if they are not the correct amounts. She refused to hook up to her TPN tonight. I am trying to get her switched to an adult GI Dr who has experience with TPN. Which means more phone calls and more advocating. 

We also will be starting palliative care for Ellie. This is NOT hospice. This is hopefully going to manage her symptoms and coordinate her care. She has an intake for that next week. 

God continues to work in my heart as he reveals truths to me through His word and I am working really hard on being more intentional in my prayer life. Ellie has so many people praying for her , it’s amazing ! I am already feeling better about cutting down my caseload at my second job. God proves that he will take care of us if we are faithful. 

70. More. Days.