Post BMT Day +76, 77
Post BMT Days 76 & 77
Yesterday brought PT/OT and acupuncture/pressure. Tate did a mini step up challenge and killed it. She then was asked ti walk for a minute and ended up on the floor about halfway through. But...she is getting stronger. Just like any of us in our workout days, some are better than others.
Tate’s TPN pump runs 18 hours a day. I connect it at about 9 pm and it runs until the next afternoon. The bag is big! About 1800 ml. By morning, it’s slightly lighter which helps a bit. She’s not eating anything and just taking sips during the day, so the tpn is completely sustaining her. We are planning on starting j tube trophic feeds soon and hopefully backing off some on the tpn.
Last night the tpn pump was being ornery. It kept alarming that the motor was malfunctioning. I kept kickstarting it until about 6 am when it completely called it quits. Tate only got 1/2 of her tpn/lipids. Today she ran out of her dilaudid prn (as needed) medicine that she’s been taking around the clock. Calling for a refill led to tpn discussion and a trip in for labs even though it was our day off. Tate’s potassium on Monday was borderline critically low and she needed an infusion. They were concerned missing her tpn, she’d need another. She’s still low, but they decided to recheck tomorrow morning after a new bag of tpn that’s bumped up on potassium.
Brent’s Place had a fun event today. A man brought his corvette that he had bought with his wife in 2004. She died of stomach cancer. Since then, he chooses a different organization each year to help him paint and design the car with rubber paint. He uses it to fundraiser and at the end of the year, he peels it off and starts again. Tate was pretty excited ti participate but due to how quickly they wanted her back today she missed it. But…I know many of the kids here had fun participating. Check it out on Brent’s Place FB page.
By the time we left the hospital, Tate’s lingering headache was a full blown migraine again. I’m hoping for a better solution tomorrow. She’s been struggling now with a migraine since Monday evening. We got home about 3 or so and Tate slept the rest of the day with cold packs on her head and tummy. Despite all our efforts, her stomach is still giving her issues. Her platelets dropped again on Monday. This was a sign of Graft vs. Host for her so I’m hoping they aren’t dropping more which will change her current treatment plan.
This week has felt long! The effort to get through the day with just the basics managing all the medical is real. But when I get to sit in the sun or drink coffee from a real mug, the payoff is worth all the responsibility. We are grateful to be so close cutting probably close to 3 hours of commute time battling traffic each day. Grateful to have a mom friend just down the hall and grateful for the two dinners each week that BP provides for me. I’ve yet to have gotten to the grocery store as it doesn’t work so well for Tate to go or be left alone. But…there’s another organization called There With Care that has delivered some pantry and snack items. So I’ve gotten creative with what they send and any leftovers last one person a long time! There’s no meal prep pressure for sure! Actually, I’m grateful for that too! I’d much rather eat than cook!