Last Night in CPCU

Today, I learned that we are actually in the Cardiac Progressive Care Unit (CPCU), not what ever I wrote in a previous post. It feels like we have been in the hosptial for a month, but it was a lovely 9 nights/10 days in the Cardiac ICU, and 3 night in the luxurious CPCU.  The CPCU is more like a hotel room where the adult is not supposed to use the bathroom, and strangers keep coming into the room all day long without knocking (or a knock as they open the door).

Zayne spent most of today in bed due to her last plasma exchange, another magnesium IV, heart echo, and a 6 hour long IVIG.  The IVIG made her sick and not feel well – Zayne is not looking forward to doing this once every month for the next 6 months (as an out-patient).  After a lot of fear and anxiety, and visits from Child Life and Galaxy, MD (medical dog), Zayne gave the OK to take out her lines.  Pulling off the adhesives was a little painful, and Zayne has decided that she will ask to have her arm shaved the next time she gets an IV.  Zayne was surprised that she didn’t feel any pain when removing the PICC lines (these went all the way to her heart) or the IV (there is another name for this, but I don’t know the medical term).

Saturday morning will be checkout.  I’m required to be trained on all of the meds before leaving.  I found her old medicine chart table that I created when we came home from transplant.  The spreadsheet given to me by the transplant team was difficult to use, so I designed a much easier template that even Zayne can figure out.  I can think of 9 meds off the top of my head, but I believe there are move.  Some have to be taken at a very specific time (10 minute window), and others need to be taken with food, while other meds need to be taken 1 hour before or 2 hours after food.   Zayne has made tremendous progress with swallowing pills, and I only will need to cut a very large pill.  She has come a long way in the nearly 2 weeks that we have been in the hospital.