Thursday, February 26, 2015

One Year S/P

In the medical world, s/p means status post.  For awhile, Megatron's diagnoses was biliary atresia status post kasai procedure.  Now, it is biliary atresia s/p liver transplant.  And today, we are one year s/p liver transplant.  I can't even believe it.

Starting on February 26, 2014, our world started to have glimmers of hope.  Everything prior to that was by far the worst, most painful and scariest time I have ever experienced.  But because of the selfless act of one person, it all turned around.  Liver disease was trying to steal my then 7 month old baby from me but in an act that I wasn't capable of, The Pilot's cousin saved Megatron's life by donating a portion of his liver.  A "beautiful" piece of his liver according to one of Megatron's surgeons. A liver that for the last 365 days has worked hard to remove all of the toxins that had built up because of Megatron's faulty native liver.  A liver that has kept working despite Megatron's body trying to reject it last summer.  A liver that has given Megatron the opportunity to grow into a normal, thriving, ornery toddler.

I am even more overwhelmed now by The Cousin's gift than I was when we first heard he was getting evaluated and then found he was a match.  I think the reason for that is before transplant, we lived hour by hour.  There was no time to sit and reflect or process what was happening.  It was happening too quickly.  We went from having a relatively healthy baby at Christmas to being added to the national liver transplant list one month later and then a month after that, having a liver transplant.  Plus, when we were in the thick of it all, we couldn't/wouldn't see how bad it was.  It wasn't until months later that I went back and looked at the photos did I see just how bad it was. Megatron was dying.  It sort of felt dramatic to think/say that back then, but it was true.  At 7 months old, Megatron was only about 12 pounds and nearly a pound of that was fluid and blood that wasn't circulating.  You could see every bone in his body as his skin just hung from him.  Yet his abdomen was terribly distended and was tight and hard.

Two days before and bones
Two days before transplant with a distended belly.

Then The Cousin reached out and said he was going to Pittsburgh to be evaluated to be a donor.  We were in shock.  But also still in and out of the hospital so we couldn't even think straight let alone think about it being a real possibility.  Then, a few days later it was confirmed he was a match and surgery was scheduled.  It happened so quickly.  And we are thankful it did.  Megatron was out of time. 

Even when transplant day arrived, it was like time stopped yet was on fast forward at the same time.  I remember not wanting to let go of Megatron that morning.  I wanted to hold him forever.  But I knew he needed a new liver and he needed it fast.  So I handed him over to a team of surgeons and nurses.  Somehow I had managed to mentally prepare myself for the wait.  We knew it could potentially take up to 12 hours for the surgery so I planted myself in the waiting room and waited.  What I didn't prepare myself for was after transplant.  I had not one thought of what would happen after I walked out of that waiting room.  I didn't dare allow myself to think of anything after the surgery.  There was too much of a risk for it to not work.

The morning after his transplant.  He looks scary and beautiful to me.  Because despite all the tubes and wires and the giant incision, he is pale, pink and no longer distended.
That shriveled up green thing on top is Megatron's native liver, compared to a healthy child's liver on the bottom.  He's a miracle and a fighter by every definition. He survived with that thing in him. And was strong enough to survive transplant.  I look at that and my heart aches for what he went through.  My heart aches that more people aren't registered organ donors.  My heart aches that The Cousin was so selfless that he risked his own life for my child.  But as the pathologist who showed us Megatron's old liver said, that liver is no longer in my child.  We can say goodbye to that bad liver and move on. 

I think as a parent, its natural to dream of your child's future.  What are they going to be like as their personality develops?  What will they look like?  What will they be when they grow up?  I stopped thinking about those things in January 2014.  I stopped stocking up on the next size clothing.  I stopped stocking up on diapers when they went on sale.  I couldn't.  It wasn't that I didn't have hope.  I had tons of hope!  The thing was, we were aware enough of what was happening and the statistics, that there was a very real chance that this would not end as we had hoped. I think going through that experience has changed me.  How could it not?  I think a small part of my brain will always be traumatized.  I think a bigger piece of my heart will always be broken.  I think my heart will always start racing and my stomach will be in my throat when I hear the beeping of an IV pump or a feeding pump.  Or a helicopter flying low.  Or an ambulance racing by.  Or the lullabies that one of Megatron's toys plays because we played them for hours upon hours in the hospital before and after transplant.

Smiles!  Two weeks post-transplant and getting discharged from the hospital!
But despite all of that, my heart is so full.  I'm finally starting to catch myself wondering what Megatron will be like in a year or when he gets to kindergarten.  Will he like school and books like his parents?  Will his hair get darker?  Random things like that.  I also feel I had a huge milestone (breakthrough maybe?).  I bought Megatron a pair of shoes from a buy/sell group on Facebook.  They are brand new and were a great price.  They were also a size 8.  Megatron is barely in a size 4 right now.  It seems like such a silly thing but for the first time in over a year, I've allowed myself to envision Megatron growing up.  I can see past the current hour.
11 months post transplant. Silly, sweet boy.
We've had a lot of ups and downs this year but none of it was as traumatic as the two months before transplant.  Yes, his abdominal closure surgery in October was horribly painful for all of us, the vomiting that lasted for 9 weeks in the fall nearly sent me over the edge and the feeding tube in December seemed like a big setback.  But none of it was life threatening.  They were bumps in the road compared to pre-transplant life.  Our perspective on life has changed dramatically this year.  We celebrate small and unconventional milestones around here (Hello learning to sit and crawl without ab muscles!  And heck yeah for having the NG tube removed!  Reducing and discontinuing medications?  Party worthy! Going up a size in diapers after NINE months in the same size?  Write that down in the baby book!) and very rarely take for granted normal and/or silly milestones.  Megatron went splashing in the cat's water bowl again?  I discipline first and then quietly snicker and smile because he CAN get into trouble.

Megatron is here to do all the ornery things that little boys are supposed to do.  And even on the hardest days (and anyone with a toddler knows, there are some hard days!), not a day goes by that I don't think about The Cousin and what he did for our family.  Every single day I think of his selflessness.  It makes me thankful that my Megatron is here to be ornery.  It makes me try hard every day to take care of Megatron to the best of my ability.  It makes me try hard to be a good person and set a good example for Megatron.  Because how else can you thank a person for giving a part of their body to save the life of your child?  There never are enough words to express that gratitude (though I don't think I'll ever stop trying).  But there are my actions.  I will take care of Megatron and his new-to-him liver.  I will teach Megatron as he grows up how to take care of himself and respect the gift he was given.  And each year we will celebrate his liver day!  And celebrate The Cousin's amazing gift. And each year on his liver day, we will tell Megatron his amazing story.


  1. I am so moved by all this like so many others but happy through choked tears that things are working out so well. Hugs.

  2. Thanks for sharing your beautiful story. You and Megatron are amazing.