How My Son Got A New Liver: The Rollercoaster Takes a Turn Toward Home

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.

The Rollercoaster Takes a Turn Toward Home

So...let's see.

Nothing grew out of the cultures so they suspected that his lung issues were severe enough for him to spike a fever.  They drained the plural effusion and his renewed ability to expand his lungs helped the respiratory therapists resolve the atelectasis.  Boom.

The overnight EEG showed that he was indeed having some small seizures for unknown reasons.  Well, the neurologists said that he was having seizures due to neurotoxicity caused by mixing cyclosporine (his anti-rejection med) and the methadone.  His pharmacist said that was impossible.  The neurologists said they were absolutely right.  The pharacist said he was absolutely right.  In short, no one knew.  That happens a lot when you are dealing with serious, rare illnesses.  Lot's of guessing.  Considerable arguing.

The day after our very busy Friday was similarly busy.  And Pip was completely non-responsive.

Excerpted from Pip's Caring Bridge site:

Saturday, December 13, 2008 10:24 PM, CST

Santa will be bringing Pip and Bunny a very large play kitchen this year.  Don't ask me how I know - I just know.  Don't tell Bunny.

I can imagine her running into the room and seeing it there for the first time.  I can imagine the look on her face. That will be pretty great. But you know what's even better?  The joy she gets from the tiniest things.  Like when I took her to the Starbucks over here at the beginning of our stay at Children's.  They had just put up their holiday wreaths and when we walked in she said "(GASP!) Oh, Mama! It's Christmas in here! Isn't it BEAUTIFUL?!" and everyone turned around to look at her and smile.  Or today, when we went to McDonalds, she did her classic take-the-burger-out-of-the-bun-and-eat-it-plain-and-then-eat-part-of-the-bun thing and she enjoyed it so much.  She actually made it look delicious.  Or the way she clutched the happy meal toy as if it was a treasure or when we took her to see the choir of 10 little Jr. High girls singing Christmas carols in the Family Center and she watched them intently and clapped loudly.  She knows how to celebrate the little things.

I was so sad today for most of the day.

Sad that Pip looked terrible and continued to be barely arousable.

Sad that he had to get an MRI AND an abdominal CT AND respiratory therapy and he was just limply moved from table to bed to table to bed like a rag doll.

Sad that when he did open his eyes, he stared blankly and didn't focus.

Sad that when they gave him a shot in his leg he barely flinched and didn't open his eyes.

Sad that it had been so long since I'd seen Bunny.

Sad that when it was time to go, she asked me to please go with her and I had to say no - over and over again.

Sad that I would be spending another night on my chair in the PICU.

Sad that I would be watching them put more and more drugs in my boy that I know are poisoning him.

Sad that Christmas is getting closer and closer and our stay here is dragging out longer and longer.

Sad that this is a roller coaster ride we will be on for the rest of our lives.


And then the overnight PICU attending came to see Pip and she was alarmed at his state of non-arousal. She said, "I think we need to wean him faster."

"So do we!"

So she put in an order to cut his methadone doses in half - and that was enough to make things brighter.  It's a pretty little thing in the grand scheme of things, I guess, but it's enough.  And then - amazingly - as if he had heard we were working to get him out of that stupor, Pip woke up and his eyes opened wide and he took a couple sips of milk and he pulled out his ng tube and he stuck his pulse ox monitor in his mouth and he chewed on his blanket and he looked me in the eye and he gave me about 3 half-smiles.

And that's not little at all.

That's a play kitchen and a pink tent and a new fancy dress and a birthday party with cake all at once.


Tomorrow: Pip Goes Home


If you wanna go back to the beginning and read the whole story, click this here link.

To learn more about organ donation and to make sure you're on the registry for your state, visit

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