Justin's and Lizzie's Journal 1/4/26
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| Justin visiting with me. Thanks, Shane, for the pic! |
1/4/26 Morning update from Justin:
Last night I made it back in time to say goodnight to her. They added sedation so she could rest better - I made it before that fully kicked in so I was able to tell her I was there. She opened her eyes and saw me and moved her head into my hand before going to sleep. These were really good signs.
No major changes last night, they maintained meds and ECMO / Vent settings. She rested OK relative to where she is.
This morning during rounds, they confirmed that bloodwork going the right direction. Infection is slowly getting better. They were concerned her immune system was fighting one of the meds but antibody test this morning confirmed that’s not the case.
Her kidneys are catching up without dialysis. Very good sign.
Today the are reducing sedation again. They are not changing vent or ECMO strings but trying to stimulate her to breathe on her own a little. Baby steps are the key as she hasn’t handled more than about 5-10% of her oxygen needs on her own since Tuesday night.
She is still getting about 60% oxygen needs from ECMO to keep stress off her lungs with the rest coming from vent. They basically want to see her breathe slightly more than the vent pushes today.
Time continues to be the plan.
I’m still amazed at this staff. Across the board, they are treating her with so much respect and clearly working hard for her. This goes down to the small details like shielding her eyes last night to make sure their flashlight didn’t hit her in the face and coming to me to see of I had any questions.
We are obviously facing a lot of big things that I ask for prayers for. One smaller one is her mouth - she has severe dry mouth so her mouth and lips are starting to bleed. This is not like a medical emergency but it hurts and sometimes it’s pooling near her throat which adds to her discomfort. Her fingers are also not getting great circulation - pray for blood flow to them and protection to her extremities while her blood flow is out of whack.
Lizzie’s friend, Kyna, is collecting favorite scriptures for hope/peace/encouragement to send to Lizzie to be read to her and prayed over her in this season. They can be sent to me via text or email.
Justin's 2nd update: Today has been OK. Very small improvement from what I can see. Her kidneys are still good, her heart is slightly better / requiring less meds, no changes to her lungs from what I can see.
I had a “doh!!!” Moment when I realized that her mouth is
bleeding in the exact spot it cracks when her fungal infection flares. I asked
for anti fungal cream and it was SO much better within a couple hours. Small
victory.
She has smiled a few times when I talk to her and she was
very sad when Rachel left. I think she’s in dreamland unless somebody is
talking to her.
Lizzie's Reflections 1/4/26:
I remember Shane telling me bye and praying for me. I thought I was laying face down on the bed, but I figured out later when talking to him, that I was laying on my back. I never remember seeing him, but I remember "Lizzie, this is Shane. I'm leaving now..." and praying for me. Having someone visit and pray during this time was unbelievably helpful.
I remember Justin scratching my head and that being the first time I felt a little relief/calm in a while. Honestly, I thought it was years, but I guess it had just been a couple of days.
Co-Pilot's Summary of Today's Medical Records:
Here is a clear, organ‑by‑organ prognosis summary based strictly on the clinical notes you provided. I cite 1–2 lines from the documents where relevant, as required.
Prognosis by Organ System (as of Jan 4, 2026)
Based entirely on your medical record excerpts.
🧠 Neurologic System
Prognosis: Favorable
You are consistently described as neurologically intact when sedation is lightened.
- “Neuro intact.”
- “Follows commands in all four on sedation, opens eyes to verbal stimulation.”
There is no evidence of stroke, anoxic injury, or persistent encephalopathy.
Your seizure disorder is controlled on home Vimpat.
Overall: Excellent neurologic recovery potential.
🫁 Lungs / Respiratory System
Prognosis: Guarded but improving
You have severe ARDS from Influenza B + Group A Strep pneumonia, requiring VV‑ECMO.
- “Worsening compliance and CXR indicative of progression of ARDS… Well‑supported on VV ECMO.”
However, your ventilator settings are stable, and ECMO sweep/FiO₂ are being slowly weaned.
- “Vent settings stable… supported on VV ECMO.”
Overall: ARDS recovery on ECMO typically takes days–weeks. Your trajectory is stable-to-improving, but lung recovery remains the main limiting factor.
❤️ Heart / Cardiovascular System
Prognosis: Improving
You initially had cardiogenic shock with EF 20–25%, likely from stress cardiomyopathy or myocarditis.
By 12/31 your EF improved to 45–50%.
- “TTE (12/31) LVEF 45–50%.”
You are now off vasopressors and being weaned from dobutamine.
- “Stable hemodynamics… not requiring vasopressors.”
Overall: Strong recovery trend. Most patients with this pattern regain normal function.
🩸 Hematologic System
Prognosis: Improving but still fragile
You have thrombocytopenia from ECMO + CRRT consumption.
- “Low PLTs most likely 2/2 consumption from ECMO and CRRT.”
Platelets are slowly rising (35 → 39 → 43). HIT is negative.
Mild oropharyngeal bleeding is noted but stable.
Overall: Expected ECMO‑related issue; recovery likely as inflammation and ECMO duration decrease.
🩺 Kidneys / Renal System
Prognosis: Strongly improving
You had acute kidney injury requiring CRRT from 12/30–1/3.
Now you are off CRRT with excellent urine output (4.4 L) and stable creatinine (1.24).
- “CRRT stopped… 4.4 L urine output… creatinine stable at 1.24.”
Nephrology signed off.
Overall: Very good renal recovery trajectory.
🧬 Infectious Disease / Immune System
Prognosis: Improving but still critical
You had Influenza B + Group A Strep bacteremia + toxic shock syndrome.
- “Strep pyogenes in blood… treated with linezolid, ceftriaxone, IVIG.”
Blood cultures have cleared, and antibiotics are being narrowed.
WBC is trending down (22.9 → 20.5).
Overall: Infection is responding well, but immune recovery takes time.
🫀 Peripheral Circulation / Extremities
Prognosis: Improving with some risk
You had dusky fingertips from early shock and vasopressors.
- “Dusky bilateral hands likely sequelae of TSS and high pressor doses… hands look much better.”
Right index fingertip remains mottled but perfusion is improving.
Overall: Most digits likely recover; one fingertip may have residual injury.
🧠 Endocrine / Metabolic
Prognosis: Good
Stress hyperglycemia is mild and controlled.
Thyroid replacement is continued without issue.
🫀 Liver / GI
Prognosis: Mild injury, expected to recover
You have transaminitis (liver cell damage) from sepsis.
- “Transaminitis likely in the setting of bacteremia and sepsis.”
No signs of liver failure.
Overall Prognosis Summary
Most concerning organ:
Lungs — ARDS remains severe, requiring ECMO. Lung recovery is the primary determinant of overall prognosis.
Organs showing strong recovery:
- Heart (EF improved dramatically)
- Kidneys (off CRRT, good urine output)
- Neurologic system (intact)
- Circulation (improving digits)
- Infection control (bacteremia cleared)
General outlook:
You are critically ill but showing multi‑organ recovery, with the lungs being the final major hurdle. This pattern—improving heart, kidneys, hemodynamics, and infection control—strongly supports a meaningful chance of recovery if lung healing continues.
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