Justin's and Lizzie's Journal 1/2/26
Justin's Journal 1/2/26:
Did rounds then flew home. Rachel sat with Lizzie. Reduced sedation to do neuro otherwise very few changes.
Lizzie's Reflection 1/2/26:
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| Right Arm Bruising (what turned necrotic) |
I remember hearing Seastar's voice, but I don't know if it was this day or not. I remember her telling everyone who came in the room not to touch my right arm. She offered to read me letters from friends and family and play music for me, but I remember feeling like I was on sensory overload and couldn't handle anything else. It's so interesting to look back and know that just existing was the max I could do at the time. Every single breath felt like fighting for another second of life. I don't ever remember seeing her face.
❤️ HEART (Cardiovascular System)
Your heart was under extreme stress from a combination of severe infection, low oxygen levels, and inflammation. This caused it to temporarily weaken.
Your heart’s pumping strength (EF) dropped to 20–25%, which is very low.
With treatment and medications that help the heart squeeze (like dobutamine), it improved to 45–50%, which is a big step forward.
Doctors think this weakness came from toxic shock syndrome, severe infection, and possibly myocarditis (inflammation of the heart muscle).
In plain terms: Your heart got overwhelmed by infection and low oxygen, but it is already showing signs of recovery.
🫁 LUNGS (Respiratory System)
Your lungs were hit hardest.
Influenza B caused severe pneumonia.
This progressed to ARDS, a condition where the lungs become stiff and filled with inflammation.
You were not able to get enough oxygen even with a ventilator, so doctors placed you on VV‑ECMO, a machine that oxygenates your blood outside your body to let your lungs rest.
Your CT scan showed multifocal pneumonia with a possible early cavity in the right upper lung, which can happen with severe infections like Group A Strep.
In plain terms: Your lungs were so inflamed that machines had to take over the job of oxygenating your blood. ECMO is giving your lungs time to heal.
🧠 BRAIN & NERVOUS SYSTEM
You were sedated for comfort and safety while on the ventilator and ECMO.
When sedation was lightened, you followed commands in all four limbs, which is an excellent sign.
Your seizure disorder is being managed with your usual medication (Vimpat).
In plain terms: Your brain is functioning well when sedation is reduced, and your seizure condition is being protected.
🩸 BLOOD & IMMUNE SYSTEM
Your body was fighting two major infections at once:
Influenza B
Group A Streptococcus (GAS) — a bacteria that caused toxic shock syndrome
This combination caused:
Septic shock
Very low platelets (from ECMO + infection)
High inflammation
Temporary anemia
You received:
IVIG (immune therapy)
Strong antibiotics (linezolid + ceftriaxone)
Tamiflu for influenza
In plain terms: Your immune system was overwhelmed by a rare but dangerous combination of flu and strep. You received the strongest possible treatments.
🩺 KIDNEYS (Renal System)
Your kidneys became injured due to:
Low blood pressure
Severe infection
Inflammation
Medications needed to keep you alive
You developed acute kidney injury and needed CRRT, a gentle form of dialysis that runs continuously.
Your kidneys are still recovering, but:
Your creatinine improved
Your fluid balance is being carefully controlled
Electrolytes like phosphorus and calcium are being replaced
In plain terms: Your kidneys were stressed by the infection and low blood pressure, so a dialysis machine is helping them rest and recover.
🍽️ DIGESTIVE SYSTEM
You are receiving nutrition through a feeding tube.
Formula: Nutren 2.0
Extra protein added
Calories from propofol (a sedative) were counted
You have a history of esophageal stricture, which made placing a deeper feeding tube difficult
In plain terms: You’re getting high‑calorie, high‑protein nutrition through a tube while your body heals.
🧴 SKIN & TISSUE
Because of shock and pressors, your fingers briefly looked dusky (poor blood flow), but this improved.
Wound care noted:
A small fissure in the gluteal cleft
No major pressure injuries
Left arm skin intact
In plain terms: Your skin is being monitored closely, and early issues are improving.
🧬 ENDOCRINE (Hormones)
Your thyroid hormone is being replaced with your usual medication.
You had stress hyperglycemia (high blood sugar during critical illness), treated with insulin as needed.
In plain terms: Your hormones are being kept stable while your body is under stress.
💧 FLUIDS & ELECTROLYTES
Because of infection and organ failure, your body accumulated extra fluid.
Doctors are removing fluid through CRRT
You received a diuretic challenge (Lasix)
Electrolytes like phosphorus, calcium, and magnesium are being replaced frequently
In plain terms: Your body had too much fluid, and the team is carefully removing it while keeping your electrolytes balanced.
🧘 EMOTIONAL & FAMILY SUPPORT
Your sister has been at your bedside. Your husband is caring for your children and returning soon. The chaplain visited and prayed with your family at their request.
In plain terms: Your family is deeply involved, and the hospital is supporting them emotionally.
⭐ Overall Summary in Simple Language
You became critically ill from a rare and dangerous combination of Influenza B and Group A Strep, which caused:
Severe lung failure
Heart strain
Kidney injury
Toxic shock
Very low oxygen levels
You needed the highest level of life support: ECMO, ventilator, CRRT, antibiotics, IVIG, and medications for your heart and blood pressure.
Despite how severe this was, your records show early signs of improvement:
Your heart function improved
Your hands regained color
Your kidneys are stabilizing
Your brain responds when sedation is lowered
Your oxygen levels are stable on ECMO
Your infection is being aggressively treated
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| Dying Finger |
You are still critically ill, but the direction is positive.
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| Dying Hands |
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| Dying legs |
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