Mar 12, 2017 Latest post:
Mar 25, 2017
Well, it has been 1 year 1 month and 2 days since my journey began, that story will follow, but today my feelings are those of being blessed and cared for beyond anything I could have ever imagined...
Last night lying in the dark I realized that without Massachusetts General Hospital and Dr. Mathieson, i would forever remain mute and with a tracheostomy...
The thought is one I can not fathom. Primarily because I haven't had to.
Since the begining, I have been able to trust that I was coming here.
Tomorrow, I check in to the hospital at noon.
Next text 2/12/2017
What a journey.
February 12th, 2016 was the first day of the rest of my life.
365 days ago I failed to wake up in the morning.
My kids tried to shake and wake me...(I mean really tried- the boy needed gas money after all). I never did. Later that day they came home from school to find me unconscious and fearing the absolute worse. But, I made it..
I had a cold a year ago. I was running a low grade temp and went to The minute clinic and given the diagnosis of sinus infection and bronchitis. It was cold season after all, we all have those this time of year. But, we now know it was much worse. Words like encephalitis, meningitis and pneumonia were making up my diagnosis.
8 days later I woke up from my coma.
11 days after that discharged for 5 days- most everybody would say I was too critical to be home, and they were right. Day 23 I managed to GPS my mom to the U and conveniently passed out in the emergency parking lot.. i was suffocating..
This day my body was off the steroids and my traechea collapsed. Day 49, I went down to surgery and I remember waking up being able to breathe and talk... they had given me my Montgomery T-tube, i remember looking at the recovery nurse and saying I can breathe and talk.. she smiled and said "yes you can".. I cried.. That was the first day of the rest of my life..day 58 discharged. That was April 10th, 2016.
On June 13th I had my 1st out patient surgery to see how I was doing, I was (my airway) looking good, my Medical team was changing, i was learning how to be my own advocate. We were looking forward to August. As far as we were concerned, we could focus on August to go to Boston.. for anyone tired of hearing about Boston and not knowing what it means.. reconstruction.. airway collapses can be rebuilt, critical ones like mine are done in Boston. The best hospital in the world for this stuff.
But August became September and September became November and November wasn't kind. I wondered what the hell is happening to me, i cant catch my breath, I think I have a cold, I am feeling wierd.. An emergency bronchoscopy showed my collapse has grown larger. I am now collapsing above my tube and Jeff and I have choices to make.. November 29th we put in a full tracheostomy, but I can talk, it's an absolute miracle.. December 1st.. Call 911! hurry..panic..WTF, I can't breathe.. not again...AND it's my trusted surgeons last day of employment at the U... on that day I lived.. they had to take away all my speech. And again, December 1st was the first day of the rest of my life.. and Boston is out of the picture.. maybe in a few months (6 months, they say)
A week ago I was admitted back into the hospital for 3 days.. pneumonia with mild lung collapse. Seriously...I know right..
I remind myself everyday that God is good. He is driving my ship, I am just riding shot gun.. i may not understand His doings and at times find His sense of humor a bit dark. But, through this all, I am a much better person than when this all started. Life is good...and today is the first day of the rest of my life.