I am not a large person. I’m about 5’2″ (on a good day with impeccable posture) and 118 pounds. My medical team has said, “Well you’re just so small…” so many times that it now elicits an instant eye roll.

My last post was about “the other shoe” and how in my heart journey I’ve found,  when I get comfortable with my situation something tends to go wrong. I told my readers that I had just gotten my balloon pump and was hoping that the only ‘shoe’ around would be my new heart. I was not so lucky. The first shoe to drop was a migraine. My nurses were on the spot and I managed to get medicine and to sleep before it got too bad. The next night I got another migraine! This time not so lucky. It took the pharmacy a while to get the meds up here and I got a raging headache that followed me into the next day.

Yesterday was my first day completely headache free. I was feeling good.  I had just gotten my feet back under me. I went to bed and was awoken numerous times by my balloon pump alarming. It was annoying but my doctors let me sleep in this morning so I was doing pretty well. These alarms persisted through most of my day until about 4:30pm when the balloon pump quite working entirely. My doctors came in and removed the balloon pump, which was less than comfortable. I’m scheduled for surgery tomorrow to put in another balloon pump. The failure of this balloon brought up the phrase, “Well you’re so small….” so they are acquiring a pediatric balloon for tomorrow’s surgery. Here’s hoping that one works. For now I’ve been downgraded on the transplant list from a 1A to a 1B. After surgery tomorrow I’ll go back up.

Silver lining: I only have five electrodes and an IV in my arm. This is the least amount of ‘equipment’ I’ve had in over two weeks! I got to read a bedtime story to Mary Ann. Her Nana taught her today how to say ‘Mom, I love you’ in sign language using a book sent to her by my Aunt Ann. We are surrounded by so much love and support it makes our journey feel a little easier. All I can say is ‘thank you’ and it isn’t nearly enough.

Courage, dear heart. ~C.S.Lewis

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