How My Son Got A New Liver: Wednesday's News

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.

Wednesday's News

So, after a night of noting that Pip’s roommate’s family were all ill with a respiratory infection and were sometimes seen twirling their face masks (requisite when you are hanging out with fragile pediatric patients) on their fingers instead of covering their noses and mouths with them and coughing into their hands and then touching the furniture and then walking through Pip’s side of the room to exit or use the bathroom – all five of them – I threw a little bit of a Shirley MacLaine ala Terms of Endearment (GET MY DAUGHTER THE SHOT!!!!) and achieved a private room.

Actually, I didn’t do any yelling.  I sweetly requested a move because there was a good chance Pip would need a transplant soon and if he had a respiratory infection, it could affect his chances of coming out alive.  I waited for a couple hours while my heart raced every time they coughed up infected phlegm in the same room as my liver-diseased son (who was also a bit immune suppressed from the steroids he “might” have been on from the study he was in...he was totally on the steroids, ya'll.)  When the move didn’t happen, I unplugged Pip from his monitors and grabbed his IV pole and walked the hallways with him.  When they asked,  I explained that I didn't feel he was safe in that room so the hallway was safer.

I promise I’m not at all high-maintenance and it took a lot for me to gather up the guts to do it but I just kept thinking “Lady, if you chicken out and he gets sick right when he needs a transplant, it will be your fault.”  So I did it.  And it worked.  The nurses were very understanding.

This was a blessing because we weren’t to be going anywhere soon.

Our room was bustling that day – it was Grand Central Station for doctors.  Pip had absolutely thrown the liver team for a loop.  They had no idea what to make of him.

One of his doctors came in and scolded me for not having ever fed him solid food.  I'm guessing this was more a cultural thing than a medical thing because in the US, breastfed babies are often not given solids until they are 6-months-old.  It has always been the recommendation of our pediatrician.  With Pip’s appetite being severely diminished, it was important to get as much concentrated fat and nutrients in him as possible.  That’s breast milk.  Sorry.  It just is.  And his nutritionist and I agreed on that.  We had tried, for a while, to pump and then fortify the breastmilk with a special formula called Pregestimil.  It’s basically pre-digested formula.

It tastes like ass.

And since you can’t explain malnourishment to a baby, you can’t explain why you are sitting there with two available breasts and yet only offering ass-formula in a plastic thing.  Pip was having none of that.  He went on strike.  And, as his mom, I couldn’t wait out the strike because he was a dangerous combo of sick and stubborn.  It was better for him to have breastmilk that was unfortified than it was for him to have nothing.  His nutritionist agreed.  And none of us agreed with the doctor who threw a fit and brought him some rice cereal.  However, Pip was feeling much better after the albumin and Lasix chaser he got the night before and it put him in great spirits.  He tried cereal and it was the best thing he had ever experienced.  I just wanted him to smile like that more.  So we spent a good amount of time playing with cereal.

The cereal-pushing doctor also said that she was going to start the paperwork to have Pip released but she wanted him seen by the liver team more often.  I said that was great and she was just about to leave when Pip’s main doctor came in and said “Oh…I guess you’ve already heard the news.”

I smiled and said, “I guess so.”

He said, “Yeah.  We just can’t get him stabilized.  He’s in liver failure.  It's pretty unusual for a child with BA to suddenly fail so quickly.  We’re not sure what happened.  But we need to get him transplanted as soon as possible.  We’re going to get him listed today and there is a doctor at Northwestern Memorial waiting to test your husband to see if he is a match.  Can you call him and tell him to go there right now? They’re expecting him.”

I looked at the other doctor who had been about to release him.  She didn’t flinch.  She didn’t say anything.  She just looked at the head of the department and nodded as he said that and then left with him when he left.

Ummmm….what?

One of his nurses came in and sat with me that evening.  She said, “Are you OK?  You kinda got some mixed information today.  They’re just a bit thrown.  No one expected this from Pip.  He was unusually strong for a long time.  Now he’s unusually sick.  No one is sure why.  I promise they’ll get on the same page.”

I love that woman.

Anyway – immediately after Pip’s doctor left the room, I called Pip’s dad and he ran from work without telling anyone where he was going.  They rushed him through preliminary testing to see if he could be a donor for Pip.  In the meantime, the transplant team started the listing process which begins with getting approval from his insurance company - in this case,  Blue Cross/Blue Shield.

But it was the day before Thanksgiving and, apparently, Blue Cross/Blue Shield employees were taking a holiday.

Every.

Single.

One of them.

 

Tomorrow: Pediatric Liver Disease (a photo gallery)
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

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