May 17 update

Another big milestone for Addison today…her breathing tube was removed this morning and she has been breathing all on her own. Slowly, more tubes and medical gadgets are getting taken away. We finally got to hear her cry too! Her throat is quite hoarse from being intubated for two weeks, so she sounds a bit like a squeaky sheep or duck. It’s actually comical.

Aaron is getting some daddy/daughter cuddling time right now. It is much easier to hold her and it only takes two nurses to move her in and out of the crib.

Her lungs are doing better and her new heart is looking fantastic. Dr. Gandhi actually used the word ‘spectacular’ after yesterday’s ECG, and for a guy who has used the word ‘atrocious’ and ‘terrible’ to describe the function of Addison’s old heart, it is especially meaningful. Addison is getting a little breathing boost with some oxygen, and she is slowly getting weaned off the sedatives and other medications. The anti-rejection drugs have already started – there are three of them right now. She will have to take drugs for the rest of her life, but by 6 months, she should be down to just one drug. There will also be lots of tests and doctor visits for the first few months, and they will slowly taper off to once every 6 months within a couple of years. We will get a lot more information about living with a heart transplant in the coming days and weeks.

Looking forward to more positive days ahead!!

Elaine, Aaron and Addison

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