We now know that the feeding tube will be done this Monday. It is something I’ve been dreading and I think Chris as well because we know that she will pull it out. The doctors even say that expect her to pull it out. There have been a couple of thoughts passed on to us: 1. She will eventually stop pulling it out because she will realize it will be put back in. 2. We may want to put it in every night since that when the feeding will take place and take it out every morning. Neither option sounds very good to me but at least it will be for a limited amount of time. My understanding is that it will still be in place after the transplant takes place because many of the medications she will need to take taste awful and we can’t risk her spitting them out.
The good news is that she is getting more feisty by the day. (just like her old self) She is more and more vocal with her sisters, basically yelling at them when she’s not happy. Today, she got jealous when Sophia was standing in front of me and literally grabbed her sleeve and pulled her out of the way, looked at me at said, “up up”. Funny, but something we need to keep in check,…. : )
The other thing I want to say tonight is thank you to all the people who have given us dinner. I can’t tell you how helpful and appreciated it is. It’s so nice to not have to think of what to make for dinner after a long day with dialysis. Chris and I truly appreciate everyone’s wonderful generosity, from meals to cards to taking Sophia to birthdays/church/playdates to babysitting etc… thank you from the bottom of our hearts.
Love,
Erin and Chris
