Post BMT Day +70
Day 132
Post BMT +70
Whirlwind and exhausting about sums up today. Lots of provider visits. Lots of review and skills checks for me, Several phone appointments to organize logistics with Homecare and skilled nursing, follow up appointment plans and lots of emotion.
Tate had acupuncture for the first time today. It was really amazing to see the decrease in her leg pain while the needles were in. She also had acupressure in her feet to work on the nausea. A fascinating science that I’m anxious to learn more about!
Pt/Ot was a fun trip to the gift shop. Tate has been planning this for months, so it was a fun way to wrap up a long hospital admission. Check out her “Oreo.”
The AMT reps showed up to check out her G/J button as after lots of digging by nursing staff, we were told the extensions that didn’t fit were indeed the correct ones. With maneuvering, we learned that during the moulding process, extra plastic was inside the J port preventing the tubing from threading in. After more manipulation and a loud click as the extra plastic gave way, the extension did indeed fit. There is still a leaky one way valve that should soften and seal with use. It was decided as we’re leaving tomorrow, to hold of on “rocking the boat” by starting something in the J tube before discharge. We are thankful that mystery is solved.
We are still on track for discharge tomorrow but this evening revealed a hiccup. As you recall, a big part of us going to Brent’s place was due to Tate being unable to tackle the stairs in our house. I learned tonight that Brent’s Place elevator is out of commission until a part arrives. Our apartment is on the 2nd floor making it currently not feasible. So, the plan is to send us across the street to a hotel. This is less than ideal for too many reasons to list. But all revolve around the fact that Tate is leaving the hospital with lots of medical equipment, Homecare deliveries, skilled nursing visits scheduled, and the need for refrigeration for tpn and meds as well as no kitchen. Essentially the only benefit to the hotel is no stairs. This is honestly about tipping me over. Taking Tate out of here with the amount of medical she still needs is a lot. So many supplies and meds. Iv poles and pumps, dressing and cap changes, lab draw supplies and flushes. Heparin locks and pill crushers. Syringe after syringe. So. Many. Supplies. Trying to bring all this into a hotel room and have it safely organized feels overwhelming. I feel sick about this. It hardly feels manageable. Yet the alternative is no discharge (definitely enough medical to keep her here yet,) and no PROM. None of it feels good tonight. I’m tired. Perspective is lacking. Tomorrow things will look brighter. I am just sad that a day we’ve looked forward to for so long is being dampened by having to move from one room to another. The hope is the elevator part will come in by Tuesday and we’ll head to Brent’s then. I wish with my whole heart that they could just give Tate a pass for PROM and we could work on getting the trophic feeds going and the tpn decreased from 20 hours a day while we wait for Brent’s to work for us. But that isn’t an option.