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March 12, 2020

She's having a stable day.

Julia's abdominal drain had been slowing down again over the past week.  At "its best", shortly after her septic shock / watermelon belly episode in January, the drain was letting out about 75ml of fluid every hour (it would let out more if un-clamped, but that affected her blood pressure.)  Her swelling seems to remain pretty stable if the drain lets out 30-40ml an hour now.  But the last few days it's been slowing down again.  20ml an hour.  10ml an hour.  2ml an hour... then nothing for half the day.

When the drain reached no output yesterday, Julia inflated like a balloon.  Her abdomen is already very swollen, but her legs and arms swelled FAST.  So much that yesterday she even started getting little red dots on her hands and feet, I assume from the skin being under so much pressure.  

We talked to the team and found out the drain had stopped completely earlier that day.  This is one area where we have to fight with the Resident doctor... constantly.  Reed doesn't normally lose his cool, but he's totally over the Residents at CHOP.  He apologized to the nurse yesterday because he came off pretty strong even though she was just the messenger.  

The Resident Doctor (who is under the Fellow Doctor, who is under the Attending doctor) is... often our least favorite person.  They switch constantly.  They walk into our room with a very limited understanding of our situation (and limited doctor-patient experience in general), and see a very sick little girl.  Duh.  We've been in this hospital longer than they've been out of school, "We know".  And they say a whole lot of poorly-candy-coated "What's the point?"s.  

So it's often the Resident who we need to argue with to do TPA.  TPA is the substance that unclogs her abdominal drain.  Drain-o.  100% of instances where her drain slowed down, and TPA was used... the drain started working again.  100%.  Literally.  And yet... every time her drain slows down, we get the, "Well, I don't think it will make a difference..." from the Resident.  

In her cancer?  No.  TPA will not cure her cancer.  In her comfort? Yes.  Giving her body some way to relieve the pressure might prevent part of it from splitting open.  That sounds like a pretty solid "comfort measure" to me.

And then we get the list of possible complications.  Not as part of his job, but as some sort of justification to not do it.  Like... guy.  Her life IS a complication.  She has terminal cancer.  I'm pretty sure she has tumors on every organ.  Essentially nothing in her body is working.  Do you think we care about a minimal abdominal bleed risk?  Add it to the internal bleeding she already has.  Whatever.  Just unclog the stupid drain.

So, after insisting, and having it ordered, then having it delayed, then being told 'there's no point', then insisting again... they finally TPA'd the drain.  And guess what.  It started draining.  So yay.  I'm sure that's a MAJOR relief to her body right now.  It's been draining at about 30ml an hour.  Will it stop again soon?  Likely.  And then guess what?  We will insist, the Resident will disagree, and in the end... more TPA!

So, that's super frustrating.  CHOP is fantastic, but if we never see another Resident again, we'd be pretty OK with that.  The Fellow doctor had no issues with it, definitely understood it's COMFORT benefits, and administered it himself.


The topic of conversation recently has been sedation, and whether or not we add it to her existing comfort treatment.  We talked to the team more, and it would be in the form of Midazolam, a benzodiazepine (other examples: Xanax, Klonopin, Ativan, etc.)  It would make her sleepy and also give her sort of a loopy, I-don't-care vibe.  And anyone who has suffered with pain or anxiety... that I-don't-care vibe can be pretty good.  They would start with a very low dose just to see how she tolerates it.  They also need to observe how her body digests it (if it's not getting rid of it, it could build up in her system and she'd be over-sedated).  

And as a reminder, she is on a vent which breaths for her, so the respiratory depression associated with stuff like this and Morphine isn't really a concern.

We wanted to at least wait until the TPA had a chance to do something in the drain before we added the sedation, so we wanted to wait until today.  

And this morning... little Julia was moving her eye more.  Looking right at daddy, and right at the nurse.  Not saying this is any sort of underlying-condition improvement... but relieving some pressure might have helped relax something.  Or perhaps that's her giving Reed the stare-down saying she's not ready to not watch cartoons anymore.

So, she had quite a bit of alert time today with the drain working again, so we're going to hold off on the sedation and re-evaluate in another day or two.


No video tonight.




*********** ~~ Julia Adams ~~ ***********   

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If you're new and want to know what's going on, my first post about Julia was on October 31st 2018. You can find them all on my Facebook page or Julia's website.  A current summary can be found here:

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Amy, don't you believe that her mind is working quite well, to spit out the suction? I certainly do! That takes considerable awareness to recognize there is something new in her mouth, she does not like this new thing, and then she finds a way to get rid of it. I'm impressed! This child is soooo smart!

Could you beg her oncologist to put JuYo back on the gentle chemo, just to see? It could do no harm, as I understand it. I just want her to have every chance possible.

Referring to the next day's post from you, I cannot believe you have to argue so long with the stupid almost-doctor about a treatment you know will help her.…

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