I love getting packages in the mail, so last week when Canada Post unexpectedly knocked on my door and handed me a big heavy cardboard box, I was pretty excited. Could it be a surprise pair of shoes? New camera gear? Free samples? Sadly, it was none of the above. I cracked open that box to find it full to the brim with paper. Children’s Hospital had sent me the entire medical paper trail Addison has created since the day she was born.
It is quite an impressive and intimidating mountain of paper. Every test result, blood transfusion, surgical intervention, 24-hours a day nursing charts, x-ray conclusions, medication changes. That makes for hundreds and hundreds of pages. Some of it is kind of amusing, such as the permission form I signed giving the hospital the go-ahead to operate on Addison for a heart transplant. Some of it is rather scary to remember – the first night she arrived at Children’s and had to go on ECMO.
Here are some of the highlights, or really I should call them lowlights:
“Addison rapidly deteriorated requiring intubation, inotropes, consequently initiated urgent institution of extracorporeal life support.”
“It was obvious the patient had primary graft dysfunction…”
“The patient has had significant mediastinal bleeding since being returned to the ICU…”
Then there are some glimmers of hope:
“The actual bleeding from within the mediastinum was much improved.”
“…spent majority of time awake, alert and settled, gazing at mom/dad and visitors…”
“…pink and warm to extremeties with strong distal pulses…”
Yesterday marked exactly three months since her heart transplant.
Elaine, Aaron and Addison