July 18-19, 2013

Days I will not forget!  EVER!!!

Yesterday was a LONG, LONG day.....longer than I imagined and the 2 final hours seemed like torture to all of us.

I apologize in advance if this post is not in the exact order, but I feel a little out of it still, my mind is not focused yet.  Running between 2 hospitals has got me lost.  Half the time, I am not sure what floor I am on...heck I may not even know which hospital I am in at any given point.  In 2 days, we have been on 5 different floors of 2 hospitals and although the hospitals are right across the street from eachother, getting to the room or ward that Chris or Alexa is on is a bit complicated for even the clear-minded. Needless to say, I have gotten lost a lot..(maybe not lost, but I have gotten off on the wrong floor of BOTH hospitals MANY times)

We got word from Christian's doctors that nis surgery had finished at about 2:45pm.  Everything had gone really well, no colications and the liver was perfectly pink.  Over at HSC. Alexa's nurse and social worker for the liver transplant team were updating us on Alexa.  Both of them are great.  Alexa's nurse was actually the one who went to retrieve Christian's liver and transported it to Alexa's OR.  We had been joking(ok not really) with her to be very careful and do make sure she did not trip.  She joked back that the kidney team always pokes fun at her for taking the longer underground path versus just walking across the street.  She told them" are you kidding me--the one time I cross the street, is when I get hit by a car, and can you imagine the liver flying?  No thanks! Long route it is!"  I appreeciate her taking that longer route!  So at about 3pm Christians's liver had already been transported over to Alexa and she was stable and doing well.

We were finally able to see Christian at about 5:30pm, and i have to say, he looked great.  His breathing tube had already been removed and he was semi-alert, in some pain but managing with his morphine drops.  We saw his surgeon at 6:30pm who informed us that everything went very well with Christian and that he had been communicating with Alexa's team and that they were working on the bile ducts and should be done in a couple of hours.  

Hoping that she might finish early, I went back to her waiting room at 7:00pm....and waited...and waited....I got a call from an OR nur at 8:18pm telling me that the surgeon was coming to speak to me so to got to the waiting room.  I told her that I was there already waiting.  She said great and hung up...that wad the extent of our conversation....and then i waited and I waited, and as each minute passed, I started to get nervous and more nervous.  Your mind can be your own worst enemy as it starts to wander and think the unimaginable.  And thats just what my mind started doing...questioning and analyzing everything.  By the time 9:03 hit, I could barely breath, I thought I might throw up.  I turned to my wonderful friend for some cross/country support becau the tension in our waiting room was at an all time high.  I needed to speak to someone who understands me, who KNOWS exactly what i was feeling....At the same time, my sister in law and mother went to speak to a family friend who coinceidentally is the PICU receptionist.  She called the OR direectly to find out what was going on....Alexa was still in surgery but that everything was fine--they had just underestimated their timing!  I thought i might puke from relief upon hearing that!  

Her surgeon finally came to spoke to us at bout 9:30--maybe a bit later and informed us that everything went very well.  She remained stable through the whole procedure and know we just had to wait to see how she takes to the new liver.  They were just preparing her for transport.  Someone should have warned me how long that takes---actually i think someone did but after 12 hours of not seeing your baby my pateince had started windling....

We spoke to her anesthesiologist who also told us that she did great....she had gone into the OR playing and smiling until she was put to sleep.  I am not sure what sedative they gave her in the pre-op but mama needed some of that, cause instantly she went from nervous and anxious to high as a kite....(Alexa:  note to self-- This is the only time I will laugh at you being high!!). Alexa was laughing at the curtains and was searching my hands, and hugging me!  She was actuallu quite amusing!  Mama could seriously have used some of whatevr she got!

When we finally got to see her, it was tough.  She still had her breathing tube in(normal) and was very swollen from all the fluids she received.  It was very tough to see her like that and not everyone was able to do it and keep their composure.  But she was doing well, metabolic labs were trending lower (good news) and liver labs although high are going down in the right direction.

This morning Alexa looked much better.  The swelling has gone down.  Her metabolic labs were consistently returning great numbers overnight so they have stopped all metabolic medications.  She is still sedated as they are repeating her ultrasound to take a look at the bloodflow.  If the results come back positive, they will remove her breathing tube and cut back on the sedation medication.  Will update as soon as I know...

Meanwhile back at TGH, Superhero dad was already sitting up this morning, asking for juice and even food from the doctors!  Slow down cowboy--one step at a time.  He is going to make his nurses earn thier wages this week--he is not going to be an easy patient...lol. He is in pain, obviously, but working through it to recoup quickly...he wants to see his girl. He is doing an ultrasound now, waitng for those results too.

(Many of you are following my facebook posts(thank you for caring so much!!)  so this may be all repetitive but I know there are people who do not have facebook who are waiting for these updates.  )

So that is where we are at--waiting to see how she responds, running back and forth between my brave heroes.  Waitng for the day we can all sleep under the same roof again!

I will leave you with a couple of pics that we took throughout the last couple of days....there will be none of either Christian or Alexa in ICU.  Daddy asked for this specifically and we are respecting their privacy....

Still in our room waitng for transport to take us to pre-op

This was in the pre-op before the sedative was given.

Alexa's new pal: