How My Son Got A New Liver: Listing

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.

Listing

Bunny was a really gorgeous baby.

On two different occasions, people actually commented on her beauty from passing cars.  Once, as I was crossing the street,  the man in the car at the stop sign rolled down his window and said "Well done, Mom."  And while sitting at an outdoor café, a couple stopped and said, “We had to stop and tell you that’s a really beautiful baby.”  How weird is that?  She also got kisses from strangers all the time so I started protectively keeping my hand on her head when she was in the baby bjorn.  Why do people feel they can kiss a stranger’s baby?  That’s nasty.

I did not have this issue with Pip.

He had an adorable face and a big, happy grin but, especially during the month of November as we waited to list him, he was clearly altered.  People avoided looking at him.  They would see me from a distance with a baby hanging ‘round my neck and would smile but as we got closer, instead of cooing at my baby as they had done with Bunny, they would avert their eyes and pretend something had caught their attention across the street.

I get it.  Sick babies are hard to look at.  But Pip loved attention.  He would’ve loved to be talked to or smiled at.

During this month of waiting to be listed, Pip began a decline.  Weirdly, I didn’t quite see it the way I should have.  My biggest fear was missing the signs and, this month, I missed all the signs.  Well, I didn't so much miss them - I saw them - but I knew he was going to get worse - we knew his first procedure had failed - so I didn't panic.

His skin and eyes became a color one might describe as “atomic waste.”  Not a surprise.  We knew his bilirubin was rising at a rate of more than one point per week.

His stomach was enormous.  He was four months old and the circumference of his stomach was considerably larger than that of my 3-year-old daughter.  But I knew his liver and spleen were swollen.  I wasn’t surprised.  I had been told to look for signs of ascites (third spacing of the fluid from his blood) and told that it would look like water under his skin.  But Pip’s tummy was really firm.

His stomach and back began to look like a road map.  But this also didn’t surprise me because I knew about portal hypertension.  As your heart pumps your blood, it has to flow unimpeded.  When it can’t easily flow through the liver, the veins get backed-up and start to expand.

Pip began to make a weird panting/snorting noise.  It wasn’t all the time, though.  And sometimes babies get on kicks where they make weird noises.  Bunny went through a month where she screamed like a pterodactyl all the time.  We had to leave a restaurant once because of it.

And he was a bit grumpier, but grumpier for Pip is still pretty darn chipper in comparison to everyone else.  He started waking up fussing instead of smiling as he had always done.  And he began to vomit more often.  But this also didn’t surprise me.  His tummy was so squished from his liver and spleen he couldn’t keep stuff down.

All this month, Pip slept in my bed next to me, propped up at an angle to help with the vomiting – right next to my face so I could hear him breathe.  Yeah…I got puked upon a few times.  My husband slept in the family room on a futon with Bunny who had decided she could no longer sleep alone.  Can you blame her?

Two days before our first scheduled day to begin the listing process, I started to feel like he was pretty sickly.  But I knew that they’d be seeing him in a couple days.  I may have even called and mentioned he seemed worse but they felt like he could probably wait for his scheduled appointments.

On Tuesday, November 26th, two days before Thanksgiving, we headed over to Children’s for the first of the listing process.

First stop was a blood draw and then we headed to ultrasound.  Pip was not his usual smiley self and he was sleeping a lot.  The ultrasound was clearly uncomfortable for him.  It went on for a very long time.  Toward the end, one of his hepatology nurses burst into the room.  She was out of breath.

She said, “Some of Pip’s labs are back and he has no clotting factor in his blood.  His blood isn’t clotting.  I need to give him vitamin K shots in his legs– can I do it here?”

Judging from the surprised look on the face of the ultrasound technician, I guessed that kind of thing didn’t happen all that often.  But she said “Of course” and the nurse ran away again to pick up the shots from the hospital pharmacy and I didn’t really feel much panic.  This would be because I had not yet learned that without clotting factor, you are at risk of sudden brain bleed or stroke at any moment.  It’s one of the ways that people with liver disease die.  Sometimes it pays to be ignorant.

Pip got his shots in his legs and we headed back out to the lobby to loiter until we were to completely waste our time with the genetics specialist who said “Yep, he looks odd but he is hitting his milestones.  I don’t know what’s up with that.  Pay me $2,000.”  He didn’t say it exactly like that, of course, but that was the gist.

When we got up to his 3pm hepatology appointment, it didn’t take long for everyone to realize Pip needed to be admitted immediately.  His hepatologist said that his expanded stomach was indeed due to ascites in addition to the swollen organs.  His blood albumin level was dangerously low and he was third-spacing the fluid from his blood.  He pointed out the portal hypertension.  Yes.  I knew about that.  He said “He’s having trouble breathing.  Don’t you hear him panting?”  Yes.  I did.  Of course I did.  I just didn’t recognize the panting as liver-related.

I should have brought him in sooner.

He said there were two ways that this might go.  He said that he might just have gotten slightly off – maybe because of a cold or something – and then his body was unable to compensate.  If that were the case, they would give him some albumin and a diuretic to get rid of the ascites and try to get him balanced out again and then they’d send him home.  The other option was that he was suddenly in end-stage liver failure.  They weren’t sure.

They admitted Pip and gave him his albumin and Lasix (a diuretic) and we settled in for the night.

 

Tomorrow:  Wednesday's News

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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