Sigh.

Anya wanted me to write an update.  Where do I start?

Well, we got married!  July 23, 2016.

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It was hands down the best six hours of my life!  Our life.

Months and months of planning, from the DJ’s playlist to the kid’s shoes to the color of the hydrangeas…we got it done.  And when I say “we”, I really mean Anya, and of course our awesome wedding planner, Heather.

People kept telling me that the day would be a blur, but I didn’t believe it.  Sure enough, it was a blur.

Also, I really thought that I was going to be nervous, but when the time came, my nerves went away because everything felt so right.  I married my best friend.  My partner in crime.

I couldn’t have dreamt of a better day, but I knew deep down inside that Anya wasn’t feeling too great.  She was having trouble breathing the days leading up to the wedding.  It was on my mind all day.  We both knew that she should’ve been in the hospital 3 days prior.  Instead we decided to wait until after the wedding to take her to the hospital.

After the hoopla died down around 11pm, Anya’s parents took us back to our house.  We were supposed to spend the night in the hotel, but Anya just wasn’t feeling up to it.  On the car ride home, Anya was dry heaving…partly from exhaustion, but mainly from the lack of oxygen over the past few days.

Before we went to bed, I asked Anya if she wanted to go to the ER that night or wait until the morning.  She said “morning”.  By 2:30am, she woke me up and told me to call the ambulance because she had a splitting headache and she wasn’t feeling right.  She hadn’t slept all night.

The ambulance promptly came and whisked us away to the ER at Inova Fairfax hospital, our home away from home.  By that time, Anya was hypoxic — her lungs weren’t processing enough oxygen causing a toxic buildup of too much CO2.  When we got to the ER, Anya was pretty much out of it.  It was a scary night.

The ER team decided to put her on bipap to help her remove the unwanted CO2 and replace it with oxygen.  It kinda worked, but not fast enough, so the transplant team made the decision to intubate her the following morning.

It took about 24 hours, but being intubated and on the ventilator helped rid her body of the bad CO2.   This all happened on the day after the wedding.

By the third day post wedding day, she looked a lot better.  She was awake and alert, unable to talk, but physically, she looked a lot less distressed.

Fast forward 7.5 weeks, Anya has been in the ICU this entire time.  We joked that this is exactly how we envisioned our honeymoon to be!  She’s currently fighting a mycobacterium infection, pseudomonas, and chronic rejection.  She’s been on a ventilator this entire time.  She’s completely awake and alert, eating and drinking (past few days), and walking but it’s just that her lungs aren’t doing great again.  Yeah, it sucks.  Bad.

Walking

We’re still hopeful that she can get off the ventilator at some point in the near future.  She’s been walking around the ICU floor almost daily.  She got up to a mile last week.  Eighteen laps with her ventilator in tow.  I’ve never seen anyone with so much heart.  Physically, she is pretty strong, but every time they take her off the ventilator, her CO2 levels elevate.  Her lungs just aren’t strong enough right now.

I’m not quite sure where we go from here.   What I do know is that Anya needs some support right now….Thanks for reading…

Sup?