How My Son Got A New Liver: Never Get Sick On A Holiday

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.

Never Get Sick On A Holiday

The liver team would have preferred a cadaveric donor of comparable size.

The reason for this is that the plumbing is very delicate.  The liver has to be attached to two veins that take blood into the liver and one artery that takes blood away.  Trying to attach the veins and arteries of a large man to the teeny tiny veins and arteries of an infant is really tricky business.  It would be like trying to attach a drinking straw to a hollow spaghetti noodle so thoroughly that there are no leaks and then getting blood to throw through it without creating a bottle-neck (which would cause a clot) where the large artery from the adult liver flows into the teeny tiny spaghetti noodle artery of the baby.  A tiny organ with tiny plumbing would be better.

Unfortunately, we couldn’t get Pip onto the transplant list so if an organ were to become available, it would not go to him.  All afternoon on Wednesday and all day long on Thursday, and all morning on Friday, hospital staff tried to get hold of the insurance company to get Pip approved.  They called the lines they always called.  Then they called some other lines in desperation.

Pip’s dad and I called the numbers we had.  We called as patients and pushed the buttons that were to lead to a live person but a live person never answered.  We called again and pushed the buttons pretending to be doctors.  We’d punch in fake codes to see if we could get a person.  No one answered.

For at least 48 hours, we tried to get Pip listed for transplant and the insurance company didn’t answer the phone.

You never know when an organ offer will come.  Every single second we were kept off that list might have been a missed opportunity.  Every single second could have been the difference between life and death for our son.

Wanna know what’s even scarier?  The goal was not just to get him listed – we needed to get him listed accurately with a really high number.  His time was quickly running out.  A high ranking was his only chance to get a cadaveric organ in time.  When you list someone for transplant, you have to send UNOS the results of the most recent bloodwork.  If they do anything in an attempt to stabilize him, they have to immediately do his bloodwork and then those are the numbers that have to be delivered to UNOS.  And they would look better because they would basically be a test of someone else's blood that had just been pumped into Pip.  This would lower his ranking.  So they were trying very hard to keep him alive but hanging in the balance.

He needed a transfusion.  By late Thursday night, his albumin level had tanked again and he was third-spacing his fluid.  His clotting factor was dangerously prolonged.  But if they were to temporarily fix it with a transfusion, his numbers from his bloodwork would be too good to get him a cadaveric liver and we still weren’t sure that his dad was a match.

It was assumed that the ridiculousness with the insurance company would be over at any moment and we would need his labs to reflect his true state.  No one could imagine that BC/BS wouldn’t answer the phone for days.  Any moment, they were going to pick up the phone and approve the transplant and Pip was going to get on the list, right?  And then they could give him the transfusion he needed.

If I came close to losing my mind during this experience, it was during that 48 hours.

At 3pm on Friday, Pip’s doctor (the cereal pushing one) came in and said “OK.  Children’s Memorial has decided to promise to pay for Pip’s transplant in the event that the insurance company, once they finally pick up the phones, denies his transplant.  They won’t deny him, of course, but we can’t wait for them anymore.  We’re sending everything to UNOS now and once he is officially listed, he’ll get his transfusion.”
See?  Don't you love her now?  Who cares that she's a cereal-pusher?

Pip was officially listed about an hour later with a ranking of 32 out of 40.  Had he been listed with his original bloodwork from the day he was admitted, before his first albumin and Lasix combo, he would have listed at 37.

They immediately began a cycle of fresh frozen plasma, albumin, and Lasix round the clock but they weren’t able to get him back to where he had been on Thursday.  When your liver goes, that’s it.

So we spent the weekend waiting for the phone to ring with an offer for a cadaveric organ and watching Pip begin to rapidly decline.

The word from Northwestern Memorial was that his dad was preliminarily a match but the doctor who was supposed to review images of his liver and sign-off on him as a donor was out of the country.

Of course.

 

Tomorrow: The Sickest Baby on the Floor

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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