Post BMT Day + 121
Post BMT Day +121
We are back at our Brent’s Place apartment and headed into a full day of appointments again. Tuesday we had a telehealth (video) appointment with her intestinal rehab team. They will continue to decrease the amount and time she is on the TPN (IV nutrition,) but won’t Dc it until she’s steady on enteral (J tube) feeds. We’ve had hiccups with having to change Homecare companies so are still waiting on a new G/J tube pump. Tate doesn’t mind much but her team isn’t so happy she’s not getting that nutrition. In the meantime, she continues to tolerate food better and better. I anticipate that the wean from both will go quickly once we get the pump!
Tate’s other specialists appointments on Tuesday were canceled due to an Ill provider and Tate was feeling pretty crummy with back pain and swollen, painful knees that we didn’t come back for PT. Wednesday was an off day, so we had a really nice, long stretch at home!
Home was so nice and a little glimpse back to a more normal reality….water in the basement and all. And just in time for company. What’s more real than that! I will say though, our perspective on life has changed quite a lot. Because although an annoyance, it just doesn’t seem that important. It’ll get figured out, fixed, and become a memory that fades as quickly as it presented. Love the ones in front of you. Spend time, energy and emotion on the people God puts in your path. The externals just aren’t lasting and ultimately won’t matter. When your world is rocked, it quickly becomes evident who remains standing in your corner. Love them. I thank God for the human blessings God has placed in our world.
Today is full of labs, BMT appointments, PT and a pentamidine infusion. We have Miami cousins and Tim’s brother Marc and wife, Jet, waiting for us at home so are hopeful we can head back home tonight if we aren’t needed here tomorrow. We are really excited for the physical company!
Todays pics….a photo tour of our apartment. More for my memories than anything, but gives you a glimpse into our second home.