Long day

 Today was a long and tiring day. We left the house at 6 AM to head down to UPMC Presbyterian for Ellie’s testing. Drinking the barium was very hard on Ellie. It made her feel sick. I am proud of her. She drank two full cups of it and part of the third. It was enough for the testing to be completed. 

After testing was done, we walked over the skybridge to UPMC Montefiore where our new friends Tracy and Brooke are. Brooke is around Ellie’s age and also a patient of Dr. Cruz. She has many health issues like Ellie and they were comparing notes. When I met Tracy, it was like we’ve been friends for years. I felt right at home with her. It’s so nice to connect with someone else whose child has complex health issues and understands the stress and heartache. 

While we were there visiting, the results of Ellie’s test popped up. I was reading them out loud to Tracy. I didn’t think anything of what I was reading. She said “Jen, go back to that one part about the feeding tube. “ The note from the radiologist said her tube is coiled up in her stomach. Precisely NOT where it should be. Oh no. I was not going to be leaving Pittsburgh until I had an answer on what to do. 

I began messaging Ellie’s GI at children’s. It was too late today for the procedure but they made space to take her at 8 AM tomorrow morning, where she will get the procedure all over again. I sat at Presbyterian Hospital for a long time until that plan was made, so we left much later than anticipated. 

I relayed the plan to my mom and asked if she could take her. Tomorrow is a busy day at work for me and I am trying to be careful on using up my sick says. Thank goodness my mom said yes ! 

When we left Presby, I could not for the life of me remember where the car was parked. I pushed Ellie in a wheelchair in circles for probably 45 minutes before we finally asked for help. The woman  working there  luckily saw us that morning and remembered where we parked and helped us find in. I am so thankful! I was tired and just ready to go home. 

Once we left Ellie asked for Chick Fil A fries. We drove a little ways and found a tiny Chik Fil A. By the time we got there , Ellie was too nauseous to eat anything so she passed on the fries. I was really hungry. It was raining outside and Ellie fell asleep. I got out my steering wheel tray and enjoyed a very quiet and soothing lunch , without any interruption and it was glorious. 

     

Then we headed back home. We got home around 5:30. I took my shower and got right in bed. I am spent. 

Pray for safe travels for my Mom and Ellie tomorrow. 🙏🏻