Post BMT +159
+159
What a weekend! So many blessings mixed with a few challenges. Friday night I clogged Tate’s J tube. This is the part of her button that has a tube that goes into her small intestine. It bypasses her stomach making it much easier to tolerate meds and feeds. Tate has a few meds that come in bead form in capsules. They’re tricky as mixed with certain meds or allowed to expand in the G tube extension turns them into concrete. They upped one of these meds to 4 capsules instead of 2. I must’ve not gotten every bead through with flushing as despite coke and espresso to try to dissolve the clog, it’s stuck. Can’t get a drop of liquid through.
This forced us to use the G tube into her stomach. This increases nausea and vomiting as she actually has something to throw up. However, Tate being desperate to not have to return to the ED, agreed to try it and she has done very well, even eating and drinking a bit! She will still need the J tube replaced in interventional radiology sometime soon. Just waiting on an appointment.
We had some fun/unexpected visitors come Sunday to Monday. Tims sister, husband, two daughters, fiancé and 4 dogs! Tatum was in dog heaven! And we all enjoyed the people. (and the dogs too.)
Tremors and movements continue with an ebb and flow and now include an all over prickly, painful skin sensation. Tate has some strange “sand paper” skin that we hope is not gvhd. We are getting geared up to restart formula feeds. We are currently doing 16 hours of iv nutrition each day. Formula feeds need to be tolerated in order to eventually get Tate off the tpn and will run 10-12 hours while she’s sleeping.
We had an appointment with Tates intestinal rehab Dr. and her dietician today and meet with our hospitalist/special care Dr. Tomorrow. There’s quite a lot to coordinate for next steps and new specialists and he’s a huge help with that. And we just love her intestinal rehab team.
We had a taste of “normal” moments this past weekend which we are so grateful for. We had two sweet friends bring dinner, which allowed me to focus on just getting settled. It’s a big transition moving all the medical home and finding a new rhythm and readjusting to normal responsibilities. We are grateful to be home!