5: Grace - Wordle's word for the day, Christmas Eve

What a great word - "grace." If you play Wordle, you'll know it was a perfect word for our day yesterday.

From darkness to light...

Last week was challenging. 5 days, 72 hours of IV therapy, 6 hours of platelet and blood infusions, and catching what sleep I could in between. Thursday night was my lowest point of the week. It looked like I was going to have to go home with a PICC (peripherally inserted central catheter) which would mean being constantly vigilant for infection, something we’ve already been on high alert for. I wouldn’t be able to shower normally, take my nightly calming hot tubs, or eventually go to the pool. I was devastated. It was late, I was exhausted, and my mother-of-four, almost-40 nurse was on her third night with me. Everything seemed hopeless and I felt I had lost all personal control over my life. But Eileen squatted down, held my arm, and helped me through the darkness. In the morning I made a plan, then messaged my doctor telling him, that no matter what, I would NOT go home with a PICC. 6 minutes later I get a message from him. “It’s being removed. You won’t need it.” Life was good again – I could see some light! (One day at a time…)

Times on right are vitals-checks. One with each pre-treatment,
4x/hour during 1st hour, 2x/hour during next 2 hours,
 then 1x/hour until finish. ~120 total during treatments.

Putting our money on the horses.

Gratitude

So, on this Christmas day I offer my gratitude to all the nurses, doctors, and hospital staff who made it through Covid… stronger, more determined, more passionate for the work they do.

·        Jason, my dedicated nurse for the first 2 days who had experience with aplastic anemia patients. He walked us through the first steps.

·        Dr. Medgyesy for her on-call attention to every detail

·        The Olivias: Olivia W. with her spreadsheets, scheduling, and red and black Hokas to match her new-to-her Lexus; Olivia T. and her sunny disposition, positive attitude about everything and incredible professionalism.

·        The Rescue teams who twice jumped into action at the first sign of possible infection – relying on their muscle-memory training; squadrons of health care soldiers on the front line.

·        Dr. Gawrlytz who came in just to give me a hug (remember her from October 4?)

·        And the countless other nurses, CNAs, support staff and everyone else who supported us at PVH.

Home

We came home Friday evening, ate some home-cooked food, then slept 10 hours straight! I had my first out-of-the-hospital blood test Christmas Eve morning, and “passed!” The first time I haven’t needed an infusion in over a week!

First blood test since leaving the hospital - I passed!

My care plan now includes blood tests 3x/ week followed by possible infusions. But perhaps that horse therapy is doing its trick! Could we beat this thing?? Yesterday was the first day we actually felt real hope. It’ll be months before we know for sure, lots of meds, doctor visits, and support from our friends and family.

9 pills, 2x/day - my new weight loss program

But the days are getting longer – the darkness is lifting, and it’s a new damn year. Bring it on!