Sunday, July 10, 2011

BMT Day +144 Back to the hospital … mysterious confusion

Yesterday was another sharp upside down curve in her roller coaster ride that resulted in being readmitted to the BMT ward … a return Teri vowed she would never consent to.

Last week

But let me start to the beginning of the week.  Teri continued to make steady and remarkable progress.  Although still walker bound, she was going strong Thursday night reorganizing the utility room, working on long term health care.   She was joking, laughing and singing along.  She was eating every 2 hours and became irritable if food was not readily available – pressure on all us sous chefs.  We called her our lean mean eating machine!  In short, she was herself.

On Tuesday, she went to the Day Hospital for blood and platelets, had her neph tubes dressing changes, and saw the BMT physician’s assistant (PA) – a good visit. 

During a 3 week visit here, Teri has become very close to Grace (niece from San Jose).  Grace has gotten in complete sync with Teri’s needs and schedule with extreme patience.  She cooked, she made protein shakes (frozen) for weeks to come, she figured and wrote out Teri’s meal and snack schedule, she loaded her new iPad with music and taught her how to use it.  She taught Teri Kegel exercises to help tighten her core abdominal muscles and help reduce her ascites (abdominal fluid) – it is helping  She cajoled me into trying fresh beet juice with wheat grass tonic (no comment).  From a culinary standpoint she demonstrated that ‘dropped (on the floor) chicken’ is flavorful and that anything (chicken, shrimp, eggplant) is tasty when coaxed with panko,

On Thursday morning at 3 am she awakened with an anxiety attack, deep sobbing.  She said it was about an overwhelming fear and premonition.  I managed to talk her down. 

Back to the hospital

On Friday at 5 am, I heard her cry out as she fell.  I found her next to the bed on the floor totally confused with her neph tube valves open and bloody urine all over the carpet – something that hadn’t happened in three months of fastidious care.  She was unable to walk.  With the help of Judy, we transported her to the Day Hospital for red blood cells, platelets and lab studies, and a visit from the BMT physician’s assistant.  Anticipating the obvious, she was indeed admitted at 4 pm and immediately a brain MRI (for blood clot, infection, excess fluid) and spinal tap (for infection) were performed.  She was so disoriented that it was easier for me to ease her into the hospital against her will.  I left her with a bed alarm that would not allow her to get out of bed, thereby risking a fall, without assistance.

What the heck is going on?  The preliminary results were all normal.  What could progress so quickly in 30 hours?

At Saturday noon, Teri no longer recognized me.  She was talking half gibberish.  She wasn’t making eye contact but looked to the side of you.  She kept trying to leave the bed.  It took three of us to hold her down at times.  Her responses to questions and even those from me were terse and robotic.

Neurology, infectious disease, nephrology and the BMT home team all came by and scratched their respective heads thinking about overdose of sedatives, viral encephalitidies (brain infection), a reaction to the experimental antiviral drug, bacteremia (in blood), a blood clot on the brain (caused by or causing the fall) …

Mysterious confusion

Saturday afternoon, I thought about what could be causing such a catastrophic confusion yet be so invisible. 

Wernicke’s encephalopathy with acute confusion, paralyzed eye muscles, ataxia (poor walking coordination) is often seen in chronic alcoholics but also in malnourished and a few BMT patients.  It is due to B1 thiamin deficiency.  I discussed this with the team and they started 50 mg IV thiamin.

Last night and today was one of my lowest points in Teri’s whole illness.  My viscera were sucked into that black hole when all hell is breaking loose and all control has been lost.  Teri was no longer recognizable as the person I knew.  In my sky is falling tendency, what if she became permanently disabled?  What if she lost her joie de vivre and ability to interact with family and friends?   What if she was no longer herself?  I realized that this despite all we’ve been through, this was perhaps the most devastating possibility, that Teri could survive cancer free but no longer remain who she is.

I shed tears for the loss of my Teri.  I notified our immediately family.  I spoke to her and received automaton responses.  I hugged her without recognition. 

Although not permitted to eat, I argued that she should.  They changed the order and I fed her this evening.  “It is delicious.”  The food seemed to calm her down.  She began to talk more coherently about how she was willing to go on a bedpan now that she is connected to both IV and numerous EEG (brain wave) leads. 

At bedtime, she even asked to give me a hug and said “I love you.” 

A hopeful sign of recognition.

3 comments:

  1. I hope Teri's stay is short, and that she returns home and to her steady progress soon.
    Thinking of you.

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  2. Hang in there, B. You are both in our prayers. Hoping you saw even more improvement today. Kathy and Bruce

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  3. Sending love to you and Aunt Teri--I hear your pain, Uncle B--and I think many of us share your pain and concern.

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