Ellie’s first week home

 Ellie’s first week home has been better than I anticipated. She seems to feel a lot better than she did with the feeding tube, but not 100% obviously. Mike is the main person who unhooks her and hooks her back up to her TPN, but I have done it twice now, so I am learning. 

We take a lot of precautions to prevent infection such as washing hands, gloves , wearing masks, and alcohol wipes. A delivery of supplies came today and my mom came over and put everything away. It has been so helpful to have her close by in case Ellie needs anything. Thanks, Mom! 

Friends from church have been bringing us meals, so that has been a huge blessing as we navigate all of this new medical stuff. 

Annie got sent home from school sick today. She has a headache , chills and sore throat. I told her she had to stay in her bed and am keeping her away from Ellie. I hate to see my kids sick. 

Ellie and I started a hair washing routine. It’s hard for her to wash her hair in the tub with her PICC in her arm so I’ve been shampooing and drying her hair every other night. She seems to like it and I enjoy caring for her. Annie came downstairs the other night and got her hair dried also. Ellie lays on the counter and hangs her head over the sink. 

I called her doctor today and asked for results from the tests she just had done and I am hoping to get a surgery date. I also reached out to her PCP who wrote Ellie a letter for me to take to a medical company for a wheelchair for Ellie. 

Things seems to be settling down a little here which is fine by me. We are looking forward to some relaxation this weeekend.