Eight Days...

In eight days, Anthony (and the rest of us!) will celebrate his two-year liver transplant anniversary (thank you, Daddy!!!). I've been reading some of my old emails home from that time. I have no idea how I handled the news that Anthony's liver had shut down, but I made it (barely). I think the real reason I didn't lose it all is because of all the support I had. My mom was there with me, and I could literally feel the love and prayers showered upon us by our family and friends.

I want to share the email that I sent out the Sunday before Anthony's transplant. I read the email now and I can read the desperate hope, crippling fear and terror. I didn't think I was feeling those emotions, but it's so obvious that I was. So here it is:

I realize that I haven't written in a while...
a lot has happened!  We've had a few steps forward,
and a few back.

We were released from Co-op on Friday and were back
in the hospital less than 12 hours later.  During
the transition from Friday at 3:00 pm (when we were
released) until 2:00 am Saturday (when we went back),
Anthony went through a rough time.  He had a lot of
phlegm in his throat, and coughed and spit it up for
a while.  He progressed from spitting up every 30-45
minutes to every 10 minutes during a 5 hour period.
So we called our nurse and she directed us to go to
the Treatment Center.  Mama and I loaded Anthony up
into his stroller and hoofed the 2 blocks to the
hospital (brrr!).  Anthony had a chest x-ray and
some blood work done.  The resident couldn't figure
out anything from those tests, so they admitted us to
the hospital.  They did a nose swab when we got to the
PICU, and RSV Disease has been ruled out, but we are still
waiting on the test results for Influenza and a few
other viral infections.

Along with this, Dr. Horslen (Anthony's hepatologist)
told us this morning that Anthony's liver has shut down.
He has been placed as Status One on the liver transplant
list.  This means that if a liver comes in within the
state or region and it matches Anthony, then he has
priority.  Mark HAS tested positive to be the living
donor and will still go through with that.  First he has
to complete a few interviews for the team so they can
assure themselves that he is entering this process
willingly and with complete understanding of what he
will have to go through.  This is not a simple or painless
contribution on Mark's part. The doctors have told me
that even if they are in the process of procuring Mark's
liver, but have not removed it, and a liver comes in for
Anthony, they will stop with Mark.  As with any surgery
there is a mortality rate, and the doctors would not put
Mark through that risk if they didn't have to.

So here is the gist of this email: by the end of this
week, Anthony will undergo transplantation: probably
Wednesday or Thursday.  Mark is on his way here right
now, and will land at 8:05 tonight.  We will meet with
our nurse coordinator tomorrow, and will have a more
definite date/time on the transplant.

Please continue to pray for all of us as we enter
this difficult and scary week.  I'm relieved that
we are finally here, but am still very frightened.
We love you all, and thank you for the support
you've shown us.

Looking over that email, I can see that there was so much that I left out:
1. The GI who released us from the hospital did so even when I told her that Anthony was spitting up and that something was really wrong. I told her that I believed we would be back in the hospital less than 12 hours after being released. I was right.
2. The resident who saw us in the treatment center was one step above stupid. It was 2:00 in the morning and he was asking me the same questions over and over. And when I would tell him the same answer, he would repeat back to me what I had just said. My mom and I actually started to laugh over the sheer stupidity of it all.
3. Anthony was admitted to the ICU after leaving the treatment center, was moved to the pediatric floor later that morning and was put BACK in the ICU later that afternoon after rounds.
4. The phlegm that Anthony was spitting up was not, in fact, phlegm. It was bile. Lots and lots of bile.
5. Being placed at Status One on the transplant list means you are dying. Quickly. Status One generally means that a semblance of "normal" quality of life is not attainable, and that the patient has less than one week left to live. In Anthony's case we (later) found out that he had very few days left.
6. My mother is a rock. She held Anthony almost the entire time we were in the apartment that evening. I wasn't coping, and she was holding what she knew was a dying baby. She is what kept me together. If not for her, I would have not been able to handle it. God knew what he was doing by having her there with me for that.
7. "I am still very frightened". That had to have been the biggest understatement of my life.