Listed: Week 2

Another week has passed and, as expected, there has been no call for a liver. He is still listed with a PELD score of 30 for another two full weeks before moving to 1b on February 12, 2018.

This week was pretty chill. Corrigan had labs on Monday and Hopkins called about results on Wednesday. He looks fantastic in regards to his plasma amino acids and no changes were made to his meds or diet.

He hasn’t looked this good in more than half a year

Doesn’t that figure?

His pediatrician wants him to remain out of school through all of next week, as the flu and other viruses are at peak levels in our area, and schools are seeing tremendous absences from both student and staff. We will reassess at the end of next week as to when he will return to class.

We picked up some grade-appropriate workbooks last week in anticipation of home quarantine, so we have been working our way through those, and I’ll pick up work from his teacher on Monday.

It’s not been awful, being confined to the house, and even though he’s removed from school he’s not on super strict restriction, per say. School just happens to be a hotbed of ick, so we are avoiding large crowds, common places (like the grocery store) and maintaining our sanity by playing outside when possible and taking rides in the car. It’s boring. Suuuuuuuper boring. But we will be through it in no time!

There has only been one phone call that made my stomach flip flop this week, and wonder if this is it, but it wasn’t. The call came in the 9 o’clock hour, a few nights ago, and our phones rarely ring (who actually uses their phones to talk, right?) let alone that late, so both of us stopped breathing a few seconds. It was a rare moment that I didn’t have my phone on my person, so as I crossed the room to answer it, my legs got heavier and heavier with dread. Yes, dread. I’m trying to be positive but while we agreed to this, we are still very much dreading it.

Anyway, it ended up being a call from Connor’s University for fundraising. Thanks UR, for the ridiculously late call for such a thing and the mild heart attack.

This weekend, we are heading out to hike. We need some blue sky overhead and cold air pumping into our lungs. Stretch our muscles and get the blood pumping. We may have to avoid people indoors but there’s no rule against fresh mountain air. (FYI, Corrigan’s immune system is strong. It isn’t compromised. The concern isn’t because he catches things easily, but when he does catch something it lasts longer and almost always leads to a metabolic crisis. Plus, if he’s sick we can’t take a liver if one should come during that illness)

He’s been metabolically stable, with zero hospitalization due to crisis, for 32 days in a row now! His longest stretch since summer! It’s been fantastic to watch as he gets farther and farther from the last elevated ammonia, his brain has become clear once more, his moods have stabilized, his sleep is deep and consistent, and he’s just full of smiles.

He has more labs for both Georgetown and Hopkins on Monday and liver clinic at Georgetown next Friday so we will be heading to D.C. for the day then.

Thank you for keeping him in your thoughts and prayers! That’s all for now! 💚

3 thoughts on “Listed: Week 2

  1. Hey Mindy, Corrigan does look great in these photos! Here is the link our our blog we kept last summer for our son’s transplant at Boston Children’s. He was 18 mo for the transplant, so things may be a bit different for an older kiddo, but most will be the same when the time comes! Don’t forget the Gatorade!
    https://johnstonestory.blogspot.com/
    We update the blog a bit less frequently now that he’s 6 mo out of surgery and doing pretty well.
    Feel free to leave a note on the blog if you have questions.

    Liked by 1 person

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