Ellie update

           

 Ellie and I left at 6 AM this morning  to go to UPMC Mercy in Pittsburgh for a diagnostic ultrasound that Dr. Cruz ordered. It will help them see if she has additional vascular compressions besides SMAS. We were  blessed with clear roads and nice weather. On the way back, we of course stopped at Salvation Army in Meadville. 

Ellie had messaged her GI doctor from Children’s about three days ago because not only can she no longer  tolerate eating by mouth, now drinking fluids causes excruciating pain. She’s been adding water to her feeds, but not enough to keep her hydrated and then of course that’s less calories she’s getting daily. She’s very sick and malnourished still. I feel like she’s just withering before my eyes.   On our way home from Pittsburgh , we got  a message that we need to take Ellie to the ER at children’s to be assessed and then admitted for a central line. 

I discussed it with Mike, and he’s going to take off work this time to take her. They’ll head down Monday. She’ll be there at least a few days. They will also consult with Dr. Cruz to make sure they’re on the same page with everything. 

Ellie expressed in the car that she is frustrated by all of this and got really emotional. Then I got emotional. I know I am exhausted , weary and just tired so I  cannot even begin to understand how Ellie is feeling. I know as a mom it is heartbreaking to watch her suffer. She’s been suffering for so long , that her body is just giving up. 

I also spoke with Dr. Cruz’s nurse last week and asked if Ellie’s surgery could be moved up. I don’t feel she can wait until July. She said yes and may be able to get her in as early as April or May. She said it will be an all day surgery with recovery in the hospital. That will be at UPMC Montefiore. If for some reason they have a cancellation, we would have to get our bags packed and head down to Pittsburgh immediately. 

In other less than desirable news: Ellie started seeing a rheumatologist because of her Ehlers Danlos diagnosis. She wanted to do some X-rays to see what’s happening in Ellie’s body. She saw on the xray that Ellie appears to have a degenerative hip disease. It’s called FAI. Here’s some info on that below. 

Because of this, she now has to see an orthopedic doctor. That’s another possible surgery down the road. How can one child have so much wrong? God must really have big plans for her and her testimony. 

Please pray for travel mercy for Mike and Ellie as they head to Children’s on Monday and for a successful procedure , and healing  and comfort for Ellie. 

In happy news: Annie leaves for Disney tomorrow! I am so happy that she gets a break from the snow and can just be a kid and have fun. Mike and I are so grateful to our friends Matt and Jen for taking her along.