Ellie update - 1/20/25

 Today was a long day. A very long day. First of all, I feel guilty that I am not in Pittsburgh with Ellie. As her mom, I have been her primary caretaker and advocate. That’s what moms do. That’s not to say Mike isn’t doing a good job , but no one can take the place of Mom. It just makes the most sense because I know I’ll take off of work when she has her big surgery. 

Yesterday , we were hopeful for help. She got into a room and they seemed to understand what she needed. Today that changed. Her NJ tube, which was misplaced into her duodenum, rather than her jenunum

(Google it. It’s a lot ), has been causing her a great deal of pain. Because of this , she can’t even drink a sip of water or eat a bite of food. Her compression is responsible for this also but the tube made it worse. 

The doctor came in this morning and said they were going to start a feed though her NJ tube. That’s the very reason she is there. Because she can’t tolerate the tube anymore. There was no plan as to how they were  going to help her. I asked for the GI doctor to call me. She had no understanding of Ellie’s diagnoses, and certainly had no understanding of how critical Ellie is right now. She was talking about a diagnosis of Ellie’s that Ellie doesn’t even have! My mama bear kicked in and I got very angry. I told her I didn’t want her treating Ellie and I insist she see the same GI dr she saw the last time she was there. I said “Do you understand what is happening here ? My daughter is critical. She can barely get out of bed. She is sweating constantly. She can’t drink a sip of water. She cannot eat. Her weight hasn’t increased since she’s had this tube. This is a life or death situation and someone needs to help here. If I need to I will drive down there myself.”  I asked whether Dr. Cruz had been consulted and she said “ What’s his name again?” 🤬🤬🤬🤬🤬🤬 

 We have been providing the same info over and over again this entire time. This is unacceptable. There is nothing worse than feeling so helpless with no way to help your child. When your child has rare illnesses that doctors don’t know alot about , you better fight really hard  for them because the doctors will just leave them to die. Ellie’s pediatric doctors have failed her over and over again. But… she’s four months from being 18 and adult doctors (except Cruz) won’t see her. 

Another doctor came in to see Ellie later. Mike called me on speaker phone and we were all able to come up with a plan to get her through tonight. 1. Get the NJ tube out. Now. 2. Start partial TPN through IV to get her some nutrition for now. 3. Give her pain meds (which they have been withholding from her saying they need her EKG results. Which was done hours ago. ) 4. Give her some Zoloft again because her anxiety is through the roof. 

The doctor said since today is a holiday that’s why there is no solid plan in place. Oh great. My daughter hasn’t had calories since Saturday morning. Take your time. 

Ellie is relieved to have her tube out. She said the pain has started to subside some. My nerves are about shot from yelling at doctors all day. Ok I yelled at one. Mike made me remain calm with the second. 😬

I am praying she is able to get her surgical feeding tube soon and that she will be able to take oral fluids now that the NJ tube is out. We might be able to wait a bit longer before she needs a central line. 

In other news- my mom made me a meatloaf tonight. I am thankful. It was delicious.