Ellie update 1/25/25

 Ellie has been doing well. The doctor said she can come home today! We will be leaving the hospital at 2 PM. I am so happy that our family will be back together again when Annie returns home tomorrow. 

I am trying to think of ways to keep Ellie engaged with the outside world when she comes home. Right now, she is at home 99% of the time. I am thinking of an online art class, book club,Bible study, stuff like that. I’m open to any ideas. 

Right now, she will have her TPN running 20 hours a day, with 4 hours off. We are going to run it 9 PM to 5 PM to make sure one of us is home to help. That means between the hours of 5-9 she has a little more freedom of not being hooked up to anything. She just told me “When I go to women’s ministry I won’t have to be hooked up to anything !”  

Mike sent me a picture earlier and he had packed away all of her feeding tube supplies and set up an area for her TPN which includes her mini fridge since it has to be refrigerated. This is a whole new medical life that we will have to get used to.  

She will be getting her surgery within the next 2-4 months.As of right now she is unable to eat or drink by mouth. She will try a bite or a sip from time to time but it results in alot of pain.  We do not have a set date for surgery yet. She’s also in the cancellation list, so that means we could head down at a moment’s notice.

 The surgery will be an all day surgery with several procedures happening at once: fixing vascular compressions, pyloroplasty, surgical feeding tube and a possible ostomy. She will most likely be in the hospital in Pittsburgh (UPMC Montefiore) for up to two weeks. We pray this happens as soon as possible. 

Thank you to those of you that ordered from our Amazon list. We got the neck and back massager today but there was no note- thank you to whoever sent that! 

God is so good and we trust that he will heal Ellie. She has big dreams of working in a healthcare setting one day.