Sigh.

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

Well, we got married!  July 23, 2016.

anya-mike-family561-x3

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?

 

 

 

Bronchial Stenosis Procedure

We arrived at the hospital around 8:45am yesterday morning.  It took about 2 hours to get back to the surgery pre-op area.  Once there, the nurses went through the standard pre-surgery protocol (list of meds, blood pressure, O2 sats, blood sugar, risks, etc.).

bronchial stenosis pre-op

bronchial stenosis pre-op

The pulmonologist talked us right before they rolled Anya back to the operating room around 10:50am.  He told us that they were going to balloon the affected area before attempting to put in a metal stent.

Around 11:50am, I went back to the waiting area and saw the pulmonologist standing there waiting for me.  He told me that they didn’t put the stent in because she didn’t need it at this time, but he did balloon part of her bronchial lobe to open it up a little bit.  He drew me a picture that looked similar to this one:

respiratory tree

The part labeled “D” is where the white stuff is located.  He said that the white stuff was “slough” (aka dead cells) and not the airway closing up.  He actually said that the size of her airway in that area was pretty “normal”.  If anything, they will put a stent in later.

It’s crazy how one doctor says one thing and then the next doctor says another.  The doctor who did the bronch on Friday was a different doctor than the one yesterday.

Anyways, I think it’s good that they didn’t put the stent in.  Even though the procedure is relatively safe, the metal stents tend to harbor unwanted bacteria and fungus, which could cause infections later on.  Anya does not need any more infections or colonizations of bacteria in her lungs.

The plan from here on out is to do a bronch every other week to clean and suction the “slough” out of her lungs.  I don’t think Anya will have any problems with the healing, since she is breathing pretty good right now.

Without the stent, I think we have a better chance of getting out of here by the spring time. That’d be nice.

So far, so good

It’s been an amazing 24 hours!  Anya is awake and alert.  She’s still on the ventillator (assisted support), but they are going to take her off the vent and put her on the trach collar around 6pm.  By tomorrow morning, the plan is to get her vertical to help with the draining in her chest cavity.  Right now, she has four chest tubes in her draining out fluids and blood.  This is normal.

When we went to see her this afternoon around 4pm, she was joking, she was agitated, she was upbeat and she was very happy to be awake.  Honestly, I couldn’t believe the way she looked.  I was expecting a lot more swelling and definitely expecting her to be asleep.  She was only slightly swollen around the neck area, but that was about it.  I don’t think there’s a protocol for transplant recovery, so they go as fast as they think the patient can go.  I think all of the hard work that Anya put in before transplant is helping her now.  Thanks to Kindred  Also, I’m sure that she’ll be feeling it a little bit more after the pain meds start wearing off.

Anyways, things are going well.  According to the ICU nurse, the bloodwork was pretty “unremarkable”, which  means that her kidney function, potassium levels, magnesium levels, hemoglobin levels, platelets, etc. are all within a reasonable levels.  Nothing too alarming.  We spoke to the infectious disease doctor and he was encouraged by how Anya was on such low support with the ventilator already.  He was very optimistic.  The pulmonary doctor said that everything looked great in the bronchoscopy.  She was SAT’ing well on the new lungs.  His only concern was the bleeding, but he assured me that the surgical team was on top of it during the surgery, so it should be fine.

Things are looking good right now, but we’re not entirely out of the woods yet.  I mean, it’s only been 24 hours.  There’s still a long road ahead of us, but I would say that things look very encouraging right now.

Thank you everyone for your tremendous support!  Every single comment on this blog or facebook or text message or in person…it means to world to us.  This process has been so hard for us in so many different ways, but knowing that there are people out there thinking about us and wishing the best for us, means a lot.  Thank you so much.