How My Son Got A New Liver: Waiting

April is National Donate Life Month and Bunny, Pip, and I want you to be very aware because without organ donation and transplant, Pip wouldn't be with us today.

More than 115,000 men, women, and children need life-saving organ transplants right now and every 10 minutes, another name is added to the list. An average of 18 people die each day waiting for organs.

This month, I'm gonna tell Pip's story - a little bit every day. We need to improve these statistics. Learning more and talking more and sharing more is the first step.

Waiting

I am a "Liver mom."

Liver moms spend a lot of time thinking about poop.  We examine the poop of our liver kid and assess the color and texture and we anticipate the next one and we try to read the clues found therein.  We’re just like Nancy Drew…if Nancy Drew poked through dirty diapers instead of basements of abandoned houses and mine shafts.

Pip’s poop was a very bright orange color because every day I force fed him a bright orange, fish-smelling substance called AquADEKs – liquid vitamins A, D, E, and K – because you need bile in your small intestine in order to absorb fat-soluble vitamins.  BA babies (can we all agree to call it BA instead of Biliary Atresia – like us Liver Moms do – and no one will think I’m speaking of an undergrad degree?) become malnourished pretty quickly.  So he took the AquADEKs that made his poop orange but I would still search through it for signs that it would be brown or green or yellow if it weren’t orange.  I'm not sure that's actually physically possible but I was on a mission.  And some days I could swear that there were green undertones and I would feel sure that his Kasai was working.  And some days, part of it would be orange and part of it would be white.  I mean WHITE.  And I would be utterly defeated.  It is a weird life when it revolves around the content of a baby’s diaper.

Pip was also on steroids.  I mean, we agreed to have Pip in a blind study where he was either on steroids or a placebo as research to see if steroids aid in the success of the Kasai.  But unless the placebo causes excessive sweating and extreme facial swelling (Moonface) our baby was on steroids.

I forget what else he took.  An antibiotic, I think.  OH!  He took a medication that sometimes promotes bile flow that is derived from the bile of polar bears.  I kid you not.  I forget what it’s called.  Actigall maybe.

I was terrified that something else would go wrong with Pip and I wouldn’t recognize it and I wouldn’t get him help when I should.  I asked my pediatrician to be a second set of eyes.  She agreed to see him every other week to make sure I wasn’t missing anything.

And Pip had his blood tested every three weeks to see if his bilirubin was going down.

I was so certain – since I had seen some green in his poop – that we would find out that his bilirubin was going down.  We would find out that his Kasai was beginning to work.  I was sure of it.

And sometimes – oh, I was just CERTAIN – that sometimes, in a certain light, the whites of his eyes were looking whiter…less yellow.  I was pretty certain that was happening.  You just had to see it in the right light was all...

His nurse called with his first set of bloodtest results as I was herding everyone out the door.  I guess it’s not really “herding” when it’s one preschooler and an infant in a car seat but with the diaper bag and the baby doll and a blanket and a jacket and a purse and a ringing phone, it feels like herding, doesn't it?

She said his blood test results were back and his bilirubin had risen substantially.

I was silent.

She said, “Now, I know that’s not the direction we want it to go and we wish it was going the other way BUT we aren’t giving up hope that it will kick in later.  It happens.  It really does…”

I said “OK.  Thanks.”

Then I got everyone into the car and over to the park district building and I got them out of the car and helped Bunny with her tap shoes and into her classroom and then I took Pip outside to the playground and stood against the chain link fence and hyperventilated...as is protocol in situations like this.

Tomorrow: Bless His Pointy Little Head
To learn more about organ donation and to make sure you're on the registry for your state, visit www.donatelife.net

Wanna get an email alert when a new post comes out? Put your email address in the box below and create an amazing and affordable (free!) blog subscription that is spam-free and that you can cancel at any time.

 

 

Leave a comment