14 Dec Maybe…
…all the wheels were turning in the general direction of home today. Getting ready to be discharged is always a bear, especially with TPN and tube feeds. But at least it’s not with dialysis! I did not hear back from the care coordinator to know if the home health peeps will actually show up with everything tomorrow or not, but if so, we should be outta here by the late afternoon/early evening. Keegan is scheduled for a “day admittance” to the Center for Cancer and Blood Disorders at Children’s Legacy next Wednesday. He will get his immunosuppression IV infusion and his monthly breathing treatment that helps protect against a certain type of pneumonia. He will also get weighed. labs drawn, and his port reaccessed. Our prayer is just that Gray and I can manage his TPN and tube feeds at home for the next week with no unplanned medical visits before the 23rd! The best scenario is that the coming week allows Keegan’s intestines to heal enough to start benefitting from the tube feeds again and not need the TPN for too long.
In other news, we finally received all of Keegan’s Beads of Courage today. Most of the categories could be counted easily (inpatient days, number of surgeries, ICU stays, ambulance rides, every rejection free month, days on ECMO, discharge from the hospital, central line insertion/removal, tube insertion/removal, biopsy, cath, etc, etc, etc). Some had to be estimated (“pokes”, which included IV attempts, labs, and shots; number of therapy visits; number of clinic visits, echos, xrays, etc). A big thanks to Staci, one of our cardiac nurses, for helping research, gather, and count them all! Here’s where what we were presented with this afternoon – current through this inpatient stay:
Keegan was asleep before Gray and I finished stringing them all, so I will take a picture of the finished product tomorrow. All thirteen strands of them! (Yes, we strung them all today. I had a terrifying image in my head of them falling and scattering all across the hospital lobby or parking garage as we tried to leave!) If you are interested in finding more out about this amazing program, CBS did a marvelous piece on the empowering and cathartic effect these beads have on kids battling cancer and cardiac diseases and their families. You can watch it HERE. I hope and expect that it will expand to cover many, many more types of chronic illnesses in the coming years.
I know it seems a bit petty in the grand scheme of things, but we would love it if you could join us in prayer for a smooth discharge and that we are home in our own beds…all of us…by this time tomorrow! Thank you so much.