Post BMT Day +67
Day 129
Post BMT +67
Happy Mother’s Day! I am beyond blessed and completely humbled by Tim’s post and all of your sweet words. I feel so privileged to have met some rockstar mamas this past year who’s battles far exceed mine and who inspire me to love harder and bigger everyday.
Keira and Tim came up today to spend some time with us. K actually stayed with Tate while Tim and I grabbed something to eat. It was so nice to get out for a bit and good for the girls to have some time together. Always missing my sweet boys, but their calls amd messages made my day. My heart is full.
Tate came up from the OR on Friday without any extensions for her new button. She needs separate g tube and J tube extensions and neither were in the “kit.” An oversight for sure and Big problem considering she doesn’t take much by mouth at all. She needs these extensions to get her the meds, fluids, and eventually formula that she needs (Yes, the daily essentials!) We found a compatible G tube (into the stomach,) but still do not have a J tube (into the small intestine.) If you recall, the whole purpose of the button change was to bypass her stomach. Especially important now with GVHD. Super frustrating! We’ve not been able to start anything with gut motility. Really hoping it’s remedied tomorrow.
We are still waiting on lots of labs that should come in early this week. Tate has been having stomach pain from the ulcers and irritation but is tolerating the steroids thus far. Tonight although she didn’t eat, she thought she might feel a little hungry. A hopeful sign! She continues to have extensive head to toe tremors. Her hands are especially bad. She requires a lid and straw to get a sip of water where it needs to go. An open cup isn’t doable. When Tate is on her feet or seated, you can see her head all the way down shake. We were thinking it was meds that we’ve already either dc’d or stopped. With no improvement, we’re back to the drawing board with the full team tomorrow.
I’m feeling so grateful for all the amazing nurses and staff that cared for us this weekend. Our housekeeper worked a 16 hour shift today and has 6 kids at home. And she smiled all day. And I’m feeling grateful to you all for continuing to care about how each day is going, being interested in what is our world that is seemingly mundane, and just loving us so BIG. You continue to be a blessing and a boost to our spirits. We thank God for you!