Today’s word: PRES

“PRES (Posterior reversible encephalopathy syndrome) presents with rapid onset of symptoms including headache, seizures, altered consciousness, and visual disturbance. It is often associated with acute hypertension (high BP). If promptly recognized and treated, the clinical syndrome usually resolves within a week.”

For those around during her post CAR-T days, you may remember the neurotoxicity she experienced.

This is similar to that.

She had a really rough night with her O2 stats and no sleep, plus her aggressiveness has gotten worse.

So, they’re checking for PRES.

An MRI is the best way to confirm/rule it out, but they couldn’t get her scheduled until tomorrow.

They did a scan of her head this afternoon to look for any brain bleeds, but it came back clear.

The MRI tomorrow will give the team a better look at what’s going on and can either confirm or rule out PRES.

If it is PRES, just like with the neurotoxicity, we have to let it run its course.

They have already begun to proactively treat her for it by stopping the medicine (Tacrolimus) typically known to be the culprit.

They’ve also started her back on antibiotics since the issues started after stopping it 2 days ago.

They feel it may have been protecting her against something we didn’t realize she had.

All that to say, it’s been a really tough day.

Mom and Dad are home with Big Sis for the evening while Papa and I stay with Avery.

She’s been asleep most of the afternoon and her BP, since they restarted her meds, have improved.

How to specifically lift her up

  • fluids continue to leave her body
  • answer to breathing problem
  • no adverse infections
  • continued overall healing

Plus keep Mom + Dad in your thoughts and prayers for their emotional, physical, and mental health.

It’s been a very long couple of days and we’d just like our happy girl back and healthy!

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