Friday, September 18, 2009
Courage, Brains...and HEART!
(from my sister's update...)
I'd be tender, I'd be gentle
and awful sentimental
regarding love and art
I could stay young and chipper
and I'd lock it with a zipper
If I only had a heart.... xo
Avery is doing spectacular! She is walking almost on her own, eating (she grazes all day long), weaning on her oxygen, and just looks like the Avery we remember almost a year ago - when this unbelievable journey came to a peak last November when she was admitted the day before Thanksgiving due to her human aortic valve deteriorating.
That was really the start of this extraordinary experience - having a mechanical aortic valve placed in early December followed by a bi-ventricular repair (a 14 hour bypass surgery) in mid-December, and then emergency surgery a week later (on a Sunday night in a blizzard) when the OR team was called in from home to repair her pulmonary artery which was bleeding around her heart.
After weeks of recovery - she was finally discharged home January 26, 2009 - skinny and week - but fortunate to have 2 ventricles (or so we thought).
Avery was home for 7 weeks but on March 22nd we brought her to the emergency room at around midnight for a "belly ache" and what we thought would be a stomach virus. Neither Mike nor I were overly excited about sitting in the ER for 6 hours to be told - "make sure she drinks plenty of fluids" but she had come so far and we didn't want to take ay chances - even if it meant a tired Sunday the next day.
A couple of hours later, Avery went into cardiac arrest -- her first of what would end up being 3 arrests due to coronary artery clotting, spasms and heart ischemia. Avery also suffered severe pulmonary and GI hemorrhages from damage to her lungs and CPR with extensive anticoagulation.
On June 10th she had her 3rd cardiac arrest and was placed on ECMO for the 4th time. She was officially listed on the heart transplant wait list on June 14th as a Status 1A.
On June 15th - Avery had her bi-ventricular artificial heart pumps placed and was changed temporarily to a hold -- or "Status 7" on the transplant list to allow her to recover from her VAD surgery.
On August 6th - Day # 51 on the transplant wait list, Avery received the ultimate gift that would save her life and allow her, with a beautifully healthy heart - to heal the many many parts of her body that had suffered from an extremely sick, exhausted, dreadfully damaged heart.
Avery's liver, lungs, kidneys, pancreas, stomach, bowel, skin, muscles and nerves (especially those in her legs from the ECMO cannulas) were all effected - but are ALL recovering now that she has the heart of her super hero beating life (and love) into her every second of every day!
...and because of this...and Avery's inexplicable WILL to live (as Dr. Laussen eloquently stated one grim night on ECMO) - her spirit, sheer guts, and love for life and all it hands her remains completely unscathed.
On Monday, Avery will have her 4th routine post transplant biopsy and if all goes as planned - she will be transferred to the cardiac floor (OUT OF THE ICU!!!!) sometime during next week.
She has been in the ICU 180 days (which does not include Thanksgiving, December and January)
As I write this - Avery is sleeping peacefully arms above her head, her covers kicked off...as she rests up to welcome another tomorrow. Her DVD player is at the end of Polar Express which is one of her favorite night time movies (year round)...which seems perfectly appropriate for how Avery faces life...
Cheryl and Mike