How My Son Got A New Liver: Week Two in the Ole PICU

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.

Week Two in the Ole PICU

The second week in the PICU, believe it or not, was even more exciting than the first.

It began with the discovery that Pip was addicted to the pain killers. It sounds crazy but a week of heavy narcotics in a tiny baby system is enough to get you all strung out.  So, when they attempted to take the sedation down, he began experiencing withdrawal – anger and twitching and itching.  They put him on methadone and Ativan just like they do with adults and the jonesing stopped.  But that turned out to be not so great either.

On Dec. 12th, eight days after his transplant, I awoke to a flurry of activity at his bedside.  Pip had spiked a fever.  Fever can indicate infection.  Infection is one of the main reasons they lose 10% of liver transplant patients during the first month.  There was a bit of a frenzy.  Cultures were taken from all his lines and he was put on heavy antibiotics just in case while they waited to see if anything grew out of the cultures because it takes at least 24 hours to find out if there is an infection brewing but that’s too long to wait to begin treating it if it actually is an infection.

Also, his liver numbers started getting really wonky and it was suspected that he had a bile leak that they might have to go in and fix if it was active.

Also, he had plural effusion – a pocket of fluid outside his lung that was pushing against his lung and making it difficult for it to expand.  He also had atelectasis which is basically a partially collapsed lung.  He had respiratory therapy every couple hours that would vibrate and then pound his chest.  Eventually, later in the week, they took him down to interventional to have the plural effusion aspirated out with a long needle.

The most disturbing episode during this time is that Pip, who had been opening his eyes and coming out of his stupor at the end of the previous week, was back to being mostly non-responsive and we weren’t sure why.  It happened around the time of the pain meds switch but it didn't make sense that the methadone would cause it.  He also developed a lip tremor.  I was the first person to notice it and figured it was just an involuntary thing from being so sedated.  I mentioned it at rounds after a couple days of it happening on and off and people immediately jumped on the phone with Neurology.  That was when we added the Neurologists to his growing list of specialists which included, at that point, Hepatology, Nephrology, Pulmonology, and of course, the transplant surgeons who were in and out of his room fairly often.

Neurology came down and pulled on his arms and legs and felt like he was limp on his right side.  They ran out of the room to get Pip into an emergency MRI to see if he'd had a brain bleed or a stroke.

Then his Hepatologist and transplant surgeon came in to explain to me that because of the rush to get Pip a liver, my husband’s liver was never biopsied.  During surgery, they cut a piece off that they didn’t need and sent it to the lab.  The results had just come back from the lab and they were surprised to find it full of granulomas.

This Idiot’s Guide to Granulomas is Brought to You by Your Idiot-in-Chief:
Granulomas are small nodules of immune cells formed in your liver as a reaction to an assault of some kind. They can be viral or histal (allergens) or fungal.  They are the immune system’s attempt to wall-off a foreign intruder in your system.  If a person has Histoplasmosis, there are generally always granulomas present and histoplasmosis can be dangerous for immune suppressed people.  You can get histoplasmosis by breathing in air that contains molecules of bat poop.  WHAAA?! you say?  Yeah.  For real.  If you go into caves or even if you are running around playing chase or ball in an area where there are lots of bats at night, you kick up the dust while you’re playing and breathe it in, see?  Specific areas of Ohio and Oklahoma…Texas maybe.  Heck, we used to lay on blankets at dusk in my yard in Florida and watch the bats.  I’m probably full of that stuff.
You are so freakin’ granuloma-smart now and that extra bat poop info is free of charge.  Bablam!

 

Pip’s docs were not sure of the origin. They said the granulomas could be a clue to something or they could be nothing. They didn't think it would affect Pip but they also didn't know for sure – it wasn’t really something they had ever seen before. They were a little surprised by how numerous and concentrated they were in the donor liver and they couldn't ignore it because we can't ever ignore anything where Pip's liver is concerned.  Especially on a day when he was spiking a fever for unknown reasons.

The MRI ruled out brain bleed or stroke so that was good.  The new theory was that he was having seizures.

So, in our busiest part of that Friday, a guy from Neurology was placing electrodes on Pip’s head for an overnight EEG to check for seizures, there was an ultrasound technician with a portable machine standing in line behind him waiting to get a look at Pip’s lung issues, and, over in the corner, the Infectious Disease team (4 of them) was grilling Pip's dad amount of time he spent in the Ohio River Valley.  Never a dull moment in the old PICU.

When everyone had left the room, we had a moment with just the three of us.  Pip’s daddy said his name and even though he didn’t open his eyes, he smiled.  His dad said his name again and he smiled again.  He was still in there.  That had to be a good sign.

 

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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