Justin's and Lizzie's Journal 1/3/26
Justin's Journal 1/3/26:
Shane McDaniel and I drove back to Denver. Rachel stayed with Lizzie. They reduced sedation a lot. Lizzie began communicating with yes/no head nods. Hospital called me to replace arterial lines that clotted. Per Rach, quick and easy. Lizzie's mouth became very bad, super crusted with blood. They increased sedation for the evening and I made it just before that kicked in. Lizzie opened her eyes when she heard me. I was able to give her head scratches and she reacted to them. She did not react when I said goodnight and that I was leaving.
Rachel's (Seastar's) Update 1/3/26:
Update #2 1:24 PM:
Lizzie is being taken off of dialysis. Her kidneys have been working okay. Hopefully over time they will flush out excess fluid. There is a possibility she will need to go back on dialysis, but hopefully not. The infection now is mostly in her lungs and out of her blood. She still has fluid in her lungs, which will hopefully go away as the infection heals. She will be treated for the flu for a total of 10 days, whether or not the flu is active.
She is getting one change in antibiotics because one that she is on can affect blood tests. She had a low platelet count and an increased white blood cell count. It's not yet known if the increased white blood cell count is from a new infection or the same one.
She shows pain in her facial expression when they clean her mouth, which is all cracked and bleeding from the feeding tube and ventilator. She has opened her eyes almost fully a few times. Opening her eyes seems to be difficult and take a lot of energy.
I've been playing songs for her and she appreciates that. Please pray she can rest today and that she can stay off of dialysis.
Update #3 8:36 PM:
Lizzie has been taken off of dialysis and her kidneys have been functioning on their own for several hours. Her ECMO machine continues to oxygenate her blood for her to give her lungs rest and time to fight the infection. She has been responsive today to questions through head nods, but now is very tired. Her pain medicine is working. She said she is not in pain. Her mouth is damaged from the feeding tube and ventilator. Sedation will probably be reduced tomorrow. She has a nurse orienting another nurse tonight which means lots of talking in her room. Please pray she will be able to get some sleep. She needs rest and to continue fighting the infection in her lungs. Thank you for praying.
Lizzie's Reflections 1/3/26:
I remember Seastar advocating for me. I remember her asking lots of questions. A chaplain came to talk to her, but I don't know what day that was. She played me calming worship music until I needed quiet. I was on overload, but the music was nice when I could handle it. I remember wondering if she had her baby with her. I was baffled she left him. I knew that meant I must be very bad sick. I still had no idea what was going on, what was wrong with me, or why I was in the hospital. I was just in a fog. I remember hurting much less than I had a little earlier.
Co-Pilot's Summary of my medical records on 1/3/26:
🫁 Lungs
Her lungs were hit the hardest.
The flu + strep infection caused ARDS, a condition where the lungs become stiff and full of inflammation. This makes it nearly impossible to get enough oxygen even with a ventilator.
What the team is doing:
- A breathing machine (ventilator) is giving gentle support
- ECMO is doing most of the oxygenation for her
- They are slowly adjusting settings as her lungs recover
- Chest X‑rays show she is still very sick, but stable
In the notes:
“Continues to require support and will for some time due to gas exchange issues.”
❤️ Heart
Her heart temporarily weakened — this can happen during severe infections.
The good news:
Her heart function improved significantly within 24 hours after arriving at the hospital.
She still needs a small amount of medication (dobutamine) to help the heart pump strongly, but she is off the strongest blood pressure medications now.
In the notes:
“Stable hemodynamics just on dobutamine; not requiring vasopressors.”
🩸 Blood & Circulation
Severe infections and ECMO can cause:
- Low platelets (cells that help with clotting)
- Mild anemia
- A lot of inflammation in the blood
Her platelets are low but slowly improving.
She is on a blood thinner (bivalirudin) to keep the ECMO circuit safe.
In the notes:
“Platelets slowly recovering likely from consumptive process.”
🧠 Brain & Nerves
Even though she is sedated for comfort and safety, when they lighten sedation:
- She follows commands
- She moves all four limbs
- She is neurologically intact
This is a very reassuring sign.
In the notes:
“Neuro intact. Follows commands in all four on sedation.”
🧬 Kidneys
Her kidneys were stressed from the infection and low blood pressure.
She was placed on temporary dialysis (CRRT) to help remove fluid and support her kidneys.
The good news:
She is now making urine on her own, and the team is trialing her off dialysis.
In the notes:
“Can trial off of CRRT.”
🦠 Infection
She had two major infections at the same time:
- Influenza B
- Group A Strep pneumonia + bloodstream infection
This combination can cause toxic shock syndrome, which she did experience.
Treatments she received:
- Tamiflu for influenza
- Ceftriaxone for strep
- Linezolid (later stopped to help her platelets recover)
- IVIG (a special immune treatment used in toxic shock)
In the notes:
“She is now s/p 3 doses of IVIG for streptococcal toxic shock syndrome.”
🍽️ Nutrition & Digestion
She is being fed through a tube in her stomach.
Because of a past esophageal stricture, they cannot place a smaller feeding tube yet.
Her liver numbers are a little elevated — this is common in severe infections and is being monitored.
🖐 Skin & Extremities
Her fingers look a little dusky (dark) because she needed high doses of blood pressure medications early on.
This is improving.
🧵 Lines & Equipment
She currently has:
- A breathing tube
- ECMO cannulas
- A central line
- An arterial line
- A feeding tube
- A urinary catheter
All are standard for someone this critically ill.
🌅 The Big Picture — How Is She Doing?
Elizabeth is very sick, but she is also showing meaningful signs of improvement:
- Her heart is stronger
- She is off most blood pressure medications
- Her kidneys are waking up
- She is awake and responsive when sedation is lightened
- Her infections are being treated aggressively
- ECMO is stable and doing its job
- Her medical team is highly specialized and attentive
She is still in a critical phase, and recovery from ARDS + ECMO is slow, often measured in days to weeks, not hours.
But the direction of movement — especially her heart, kidneys, and neurological status — is encouraging.
My heart hurts reading all the suffering you have endured. I pray for you everyday Lizzy.
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