Teri was discharged on Monday afternoon, after ‘waking up’ and regaining coherence at 1 am Sunday morning.
Monday and Tuesday, Teri had active and interactive days, jubilant, herself. Rhonda cooked up a storm and froze ahead using two gourmet recipe books written specifically for cancer patients e.g. frittata, avocado dressing. As with each of our support crew, when it quiets down late after Teri has succumbed to respite however brief, we share our respective burdens with our parents, sibs, kids, health, work and health insurance.
On Wednesday, Teri took Ben and Rhonda to the museum to view the China exhibits. Gradually, she became more somnolent and forgetful, falling asleep every 15 minutes even with egg roll in hand, unable to recall that she had just visited the museum. She confused Ben with me. She became obstinate. Ben kept me up to date, while I was in the clinic.
What could happen next?
A flood
Wednesday evening, at home, I found Ben wading in the bathroom after Teri had inadvertently clogged the commode with toilet paper. Despite our concern that she could slip on the wet tile, Ben evacuated her safely. After extensive mopping, plungers and flexible steel tubing failed to clear it and we had to resort to our building man after a king’s ransom.
Teri seemed unperturbed, lost in her reverie. I’m wondering if it is happening again?
Fearing a potential fall, I cajoled and pleaded with Teri was not to leave the bed that night. But she did. I held her hand throughout the night trying to keep her in bed and managed to do so several times, but not all.
Thursday at 6 am, I awaken with a start to Teri’s adjacent empty silhouette in the bed sheet. In the bathroom, she had removed most of her edema bandages but didn’t know why. She was muttering to herself. She couldn’t operate the faucet handles and kept trying to turn the spout. She did eat breakfast
Readmission
I texted Dr. H. with an update, requested additional laboratory studies and possible readmission to the hospital. I went to work, then his nurse called and said Dr. H wanted to readmit her. No surprise. I finished my conference call, and returned home to take her in. I had no idea how we would manage her even with three of us at home unless we took three hour shifts all night watching her.
Thursday 12 noon, Teri was readmitted for confusion. The oncology fellow asked her about month, day, day of the week, location, President of the U.S. She batted 2 for 5. She answered in a emotionless, monotone, robotic voice. They asked her to write her name and date, she laboriously printed out TERESA LI. She couldn’t spell July.
I frightens me to see her as a shadow of herself.
She went for her scheduled nephrostomy tube change due to continuous leaking that began after her fall last Friday. Fortunately the tube only to be repositioned, not re-guidewired and replaced.
Recovery
Thursday 6:30 pm At dinner at a Brewer’s tailgate party in the oncology ward lounge replete with hot dog cart, umbrella, uniforms, nachos/cheese, Brewer’s paraphernalia (Teri got a tee shirt), Teri began having extended conversations with several nurses, ate a whole hot dog and led the singing of “Take me out to the ball game.” Teri seemed to reemerge from her cocoon of confusion.
Thursday 8:30 pm She was asked to sign a consent for blood transfusions. I offered to sign. She said she would do it. I looked at her signature. It was … normal cursive, not the staccato print! She gave Ben and I a warm goodbye. But, she doesn’t remember the last two days, again!
Why such a detailed time line? To document that Teri emerges from deep dementia to normal know-how in mere 6 hours!!!
Friday am. She calls “Hi, when are you coming? Can you bring my nail file?” She calls early when she feels good. When hospitalized for 80 days and 54 days post transplant, she called only sporadically, sometimes not for weeks on end. She received blood transfusions X2, and platelet transfusions X2. The panel of lab tests was unrevealing except for a slight elevation in the ammonia. Notably, there was no PCP found on this urine toxicology test that had found previously.
Although undiagnosed, Teri had returned to herself, and was discharged to come home late Friday afternoon.
I realize how tired I’ve become. This is a living on a different edge. It is not the edge between life or death. It is precipice of not knowing what lies just beyond the edge. Is it her demented twin. Is it a flood. Is it a fall and potential bleed. Is it her normal self?
Still a mystery!
So what is causing this acute and profound confusion, dementia? Will it happen again? Will it get worse? Will it leave any long term effects?
Although I thought I had wrapped it up as a O-B1-kenobi vitamin deficiency causing Wernicke’s encephalopathy, it was not to be as simple as that. Wernicke’s usually has positive MRI findings and more opthalmoplegia (eye paralysis) … but it can continue on even after supplementation.
The evaluation effectively excludes all the intracranial bleeding or pressure, encephalitis, sepsis, urinary tract infection, abnormal chemistries, liver failure. The elevated ammonia is not enough to cause this.
The phencyclidine (street name Angel dust) found in her urine last hospitalization can only be a false-positive test. We reviewed all her foods, meds and supplements with those who had administered them over the previous 24 hours prior to each bout of confusion. The BMT team focused on the only non-food, non-prescribed drug received which was a protein-vitamin supplement (prescription only) given to aid her intestinal recovery. They thought that it could potentially be contaminated. But by a street drug? Everybody is reaching. The team had asked us to stop it – we did 7 days ago – it wouldn’t be implicated in this second bout of confusion. As far as further reaching, Dr. H. did ask Ben if he was slipping his mother any pot.
The only remaining unknown is the experimental antiviral agent. It is an established agent now modified with a lipid molecule to aid in penetration into the infected cell. Could this agent be causing a false-positive response to PCP? Could it be acting as a PCP-like substance? The company has never seen a reaction like this. That is the going hypothesis. We will hold it.
The oncology fellow suggested as a true unknown, Teri’s case should be featured on “House” a TV show on medical mysteries that I have not yet seen.
Today, both Ben and I witnessed up close and personal Teri’s six hour surfacing from deep six confusion to clarity. Now twice. Hopefully not thrice.
I'm so sorry to read this news... At the same time, I'm glad to know that Teri's problems with confusion are episodic rather than continuous. That, combined with the fact that she returns to her usual, cheerful, thoughtful personality offers hope that the confusion will pass and that she eventually will return full-time to being her usual self. Please know that I'm thinking of all of you and wishing you the best. Always, Bob Mowry
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