Testing, answers and more unknowns

 My mom and Ellie had a successful trip to Pittsburgh on Friday to get her feeding tube replaced. Since Ellie has had her tube I’ve noticed a little increase in energy. She has been busy working on all of her crafts that people have sent her. Thank you to everyone that has sent her things to keep busy. I meant to message everyone privately and have been so busy I haven’t had the chance. On Saturday, I spent all day and into the evening helping the girls clean their rooms. On Sunday, we went to church and Ellie was happy to be back to worship with her church family. 

After church, we stopped at Dollar General and Ellie was able to walk around a little. Next to Salvation Army , we love DG! 

Today we left home at 7 AM and made it to UPMC Mercy where Ellie had a CT scan with contrast. She had one hour to drink a large glass of contrast. She said it was much better than drinking barium. While we waited, we spoke to a worker there about her daughter with Down Syndrome. I told her I teach special education. She showed me so many photos of Ramona and they were fantastic. This girl has dozens of costumes and loves to dress up and go to Comic Cons and other events. 

Her CT appt was running late and we were so worried we wouldn’t make our appt with Dr. Cruz on time. I was so stressed out and rushing around but we made it on time. Our appointment time was originally 12:00 but he was really busy today so we didn’t see him until 2:00. The appt was a lot to hear. To begin with he took one look at Ellie, and asked her several questions and said “I’m fairly certain you have Ehlers Danlos Syndrome”. This was no surprise for us because we have suspected that for a long time. It can’t be confirmed without genetic testing though so we will have to get that. 

He then went on to look at her scans she just had done. Her bowels are in very bad shape and distended.The PA and nurses actually gasped when he pulled her imaging up on the screen.  Food is not moving through properly. This will require surgery and possibly an ostomy bag. This was hard for us to hear. He also suspects a compression issue : SMAS, MALS, Nutcracker, or Maythurner Syndrome. He said she may have just one of those or all of those. When she has surgery( likely next summer) he can see exactly what’s going on and correct her issues. If you look at the picture below on the left her drew what a normal bowel looks like with waste only in one section. On the right it shows her Ellie’s is distended and completely packed full. 

He also noted that her stomach is abnormally large. The muscle that pushes food from the stomach to the intestines is not working correctly. He will try and correct that during surgery as well. This will be an open surgery, not laparoscopic so recovery will be longer. She may also require a G tube feeding tube placement at the time of surgery. 

Even with her feeding tube, Dr Cruz doesn’t feel she’s getting enough nutrition and wants her to get a central line to her heart. This will require a hospital stay of up to a week and her doing infusions to her heart. It also comes with a risk of infection and other things. 

Dr. Cruz is the first doctor to LISTEN and not tell Ellie that she’s crazy. He validated the fact that she is really sick right now. He is an answer to prayer. 

So we will be back to Pittsburgh within the next couple weeks for more testing… 

The only thing I can do at this point is be Ellie’s rock and pray for her complete healing. Because if I don’t do those things, I will curl up in my bed and just sob and grieve for all of the issues that Ellie is dealing with. 

To everyone who reads this and is praying for Ellie, thank you. We love you all. Keep praying. 🙏🏻