How My Son Got A New Liver: The Sickest Baby on the Floor

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 Sickest Baby on the Floor

(excerpted from Pip's Caring Bridge site)

Sunday, November 30, 2008 3:00 PM, CST

Waiting.

We're just waiting.

Waiting for some family to receive the same kind of horrible news that we are trying desperately to avoid. We are all so precariously balanced, you know? All of us. And we have no idea how precarious until we get knocked down. I hope you saw your family over the holidays. I hope you hugged them tight. I hope that when your mom annoyed you, you remembered how lucky you are that she's still around - even when she gets all up in your business. I know that I would really like my mom to be here right now and she could get as up in my business as she wanted.

I hope that when your kids get all hyped up on holiday sugar and won't go to bed or they color on the walls or forget to use the bathroom on time you will laugh. It's awesome - all of it. It's funny and precious and you'll think back on it fondly some day. I can't wait for him to have normal kid problems. I hope he colors on the walls - freshly painted walls - with permanent ink. It's fine. I hope we get there. It feels far away right now.

 

Pip's surgery was scheduled for Wednesday morning and then switched to Thursday due to scheduling issues.

On Sunday, Pip stopped taking food by mouth.  They put a g-tube into his nose so they could put him on a continuous feed.

By Tuesday, he was vomiting so often that they turned off his feeds for good.  Because he was no longer eating or drinking, he was put on IV fluid to keep him hydrated.  Since they were already using his PICC line for transfusions, potassium, and lasix in an endless loop, they had to put another IV into his hand for the fluid.

Then his kidneys shut down.  It's called Hepatorenal failure and they don't know why it happens but often, when your liver stops working completely, some other organ systems go as well.  They couldn't stop pumping in the fluid but none of it was leaving his body so he blew up like the girl in Willy Wonka.  A nephrology consult was called in (the kidney folks) and they tried various diuretic combos but nothing worked.  Pip's lungs began to fill with fluid.  With fluid in his lungs and swollen organs pressing on them from the outside, Pip had difficulty breathing.  His heart was racing to try to keep his blood oxygenated. He was constantly panting as if he was running a marathon.

At this point, he was only able to whimper, sleep restlessly (generally only if someone was holding him) or stare at the wall - often without blinking for minutes at a time.

By Wednesday, he was no longer able to whimper.  He occasionally made a low groaning noise but mostly he was silent and limp.  When he opened his eyes, they were unable to focus and would look off in opposite directions.  The doctors were still struggling to get his kidneys to kick in and there was some talk of sending him to the Intensive Care Unit.

I was terrified that, given his drastically compromised state, they would cancel his surgery.  I asked one of his doctors and he said "Oh, no.  We won't cancel it.  Because, at this point, it's the only thing that can fix this."

I was naive enough to be totally relieved by this.  In my head, I heard "Oh, he's not too compromised to make it through surgery."  But that wasn't at all what he said.  What he said was "Even if we were 99.9% sure that he would die during surgery, we would still take him in because we are 100% sure he'll die without it."  So, there again, ignorance is bliss.

On one of those nights when Pip was in his rapid decline, the GI Attending for the week, Dr. B, came in to let us know he was leaving for the night.  I'm sure I looked panicked.  I didn't like being left with only residents (no offense to residents but, you know, they're residents.)

I think I said "Oh, no."

Dr. B said, "I know you're terrified.  I have already called my wife and she has put our son in my bed.  I'll be sleeping on the floor of his room with a phone next to my head.  If there is a change, I'll know about it.  If there is a question, I'll be the one to answer it.  I have to sleep or I'm no good to anyone but I'll be back in this room first thing in the morning."

That's why Pip will go to Lurie Children's Hospital of Chicago (formerly Children's Memorial) until he is 18 and they kick him out.  Well, that's one of the reasons, anyway.

So, at some point on Wednesday, when I left the room for a moment, my brother-in-law took this photo of Pip because he thought he'd never see him alive again.  He didn't tell me about it until a year later when I was lamenting the fact that I stopped taking photos for five days.

 

Night before transplant

 

Then, at 3am on Thursday morning, some sort of miracle happened.

A balance within Pip's tiny body was finally achieved.  His kidneys suddenly started working.  The fluid drained off over the next three hours and he woke up in the morning alert and able to focus.  His breathing was easier and his heart rate slowed down a bit.  He never gave us a smile but he did grab at our fingers a few times.

He was wheeled down to begin surgery prep at 9am and my sister and I were darn near jubilant.

Imagine being overjoyed to send your 5-month-old down to his liver transplant.

This world is crazy, ya'll.

 

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 www.donatelife.net

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