How My Son Got A New Liver: Riding the Rollercoaster

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.

Riding the Rollercoaster

They promised his recovery would be a roller coaster and they didn't disappoint.

I developed a little routine there in our tiny PICU home and a little routine was developed around me.

The exhaustion caught up to me almost instantly after seeing Pip in the recovery room.  He was heavily sedated so he didn't really require my care as he had constantly during the previous week and my body responded by almost completely shutting down.  When we got to the PICU that first night, the walls began looking wavy - like a mirage - and I passed out on my little cot in the corner.  I would wake up a couple times a night when Pip would stir but they are watched like hawks in the PICU and by the time I would sit up, the nurse was in and was taking care of his needs.  My eyes felt like they were full of sand and my limbs felt so heavy they were hard to lift.  So I just didn't.  I bet I snored but I was too tired to be embarrassed.

Each morning for the first week, I would wake up to a stranger draping me with a lead blanket.  I would open my eyes as the blanket was coming down to cover me and it looked a lot like someone was burying me alive.  I was too tired to protest being buried alive, though, so I didn't give it a whole lot of thought. Pip would get his morning x-ray as I huddled under the blanket - no longer asleep but not wanting to be radiated.  I would then get up, throw on some clothes, and head down to the first floor.  I'd walk through the ER, out the amulance bay, and across the street to Starbucks.  After awhile, they knew me.  They'd pour my coffee without my asking.  Coming back through the ER, the security guard also got to know me and stopped asking me to show my wristband.  I liked showing my wristband, though.  It was blue.  Blue means you have a child in intensive care.  My entire identity, since his diagnosis, had become "mom of kid with liver disease."  The wristband was my uniform.  It made me a member of a club.  It was a badge of honor.

I always went to Starbucks early because I wanted to be part of rounds which tended to happen around 9am.  At Children's, parents are encouraged to attend and participate in rounds, which, in the PICU, happens outside the door to the room.  There's an intensivist who sits at a portable computer desk and leads the discussion, members of the transplant team including the hepatologist and members of the surgical team, and a bunch of residents who are rotating through.  It was fascintating because I was a Grey's Anatomy fan at the time (I'm not anymore...they did me wrong...but that's a different post) and you always saw the Grey's Anatomy residents doing rounds and it really was kinda like that.  The chief difference I noticed is that the residents on Grey's Anatomy used inflection and spoke clearly and loudly enough for everyone to hear.  Pip's residents mostly looked blank and mumbled numbers from his latest set of labs.  Where's Sandra Oh when you need her?

After Dec. 5th, another part of my routine became the act of strategically placing myself near a trashcan any time something was going on with Pip because I never knew when some sudden occurance or new information might cause me to feel like my coffee was going to come back up.

On the day after his transplant, I had just returned with my coffee and was standing at the foot of his crib watching him sleep when alarms started going off and lights started flashing.  Instantly, the room was filled with nurses and intensivists who surrounded his crib and yelled things like "Bag him!!" and "Stat!!"  Again, totally compelling on Grey's Anatomy but really sickening when it happens at your baby's bedside.  I backed away from the crib so that they had room and inched sideways to the trashcan.  It's against a mother's instinct to move in the opposite direction of your child when something bad is happening to him but it's kinda your job in the hospital.  Totally weird.

The entire incident lasted probably two minutes but I remember it like a slow motion slide show.

It ended up not being a huge deal.  The tape around his mouth that was holding the ventilation tube became wet from his spit and, when he stirred a bit, the tape came loose and a tube fell into one of his lungs.  They had to get it back out and he couldn't breathe on his own yet so they had to bag him (you know, squeeze a handheld bag that pumps air into his lungs) while they dug for it and repositioned it and taped it back in.  They were worried that the episode had collaped his lung so a portable x-ray was brought in but his lung was still inflated.

So, during that first week, news came in several times a day - some good, some bad, some confusing - roller coaster-like, as promised.

They had a hard time keeping his pain under control and had to keep raising the dose of his pain medication.  He would wake up and begin to cry and scream.  This is always sad but it's especially heart-breaking if your child is on the vent because he couldn't make a sound.  Tears would stream down his face and he'd turn red and his blood pressure alarm would go off but he was totally silent.  They'd shoot him full of pain meds and I'd rub his head and feel helpless.  Another part of the routine.

When they gave him his pain meds, his blood pressure would then become alarmingly low and he would require a blood transfusion.  The transfusion would fix the blood pressure issue and raise his hemoglobin which was too low but it would also put him at greater risk of developing a clot.  Lots of careful balancing and monitoring going on.

His liver function numbers would be good, then bad, then good, then bad, then worse.  His surgeon had a very nice surgical fellow working with him who would come in and tell me that Pip's numbers were such that the team would probably suspect rejection and send him for a biopsy that day.  The first time he said it, I inched toward the trash can and held my breath.  Then the liver docs would come in and say they felt like the yo-yoing of his numbers was pretty normal.  Still, that surgical fellow would come to me and say that same thing every morning. The fourth morning in a row that he said it, I said "Oh, yeah?  Biopsy, huh?  Sweet."  Silly fellow.

But his bilirubin, after ONE DAY with his brand new (to him) liver, was 8 when it had been 27 before surgery.

And toward the end of the week he opened his eyes and they were white.

White!

For the first time ever.

 

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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