After transferring from UCLA
on Friday evening, Susan is back in acute rehab at LB Memorial. She had
physical, occupational, and speech therapy evaluations on Saturday and an
otherwise restful weekend.
She had a good first day of treatment
according to her nurse during my evening visit. She'll have 3-6 hours of
multi-disciplinary sessions daily; and I’ll find out soon how long they
recommend she stay.
The events of the past month
have sapped her strength, stamina, and ability to converse much. She’s alert
and responsive when she needs to be, but when it's time to rest, she sleeps
deeply. It’s been about four years since her last similar setback, and if
that experience is a reliable guide, it will take her months to get beyond her
physical weakness and cognitive fog. Still, we’re grateful for good progress so
far and trust God to help us with the steps along the way.
Although I was able to coax a few smiles from Susan yesterday, much of the day she didn't feel well and had several vomiting spells. Her cognitive and physical weakness persisted. She could offer only delayed responses and one-word answers.
Her neuro-oncologist confirmed she needs to see the neurosurgery team at UCLA as soon as reasonably possible to evaluate her shunt. With more vomiting today and no other improvement, the UCLA neurosurgery team agrees and wants her admitted to the hospital. Susan will be transferred once doctors finalize the details and a bed is available.
We're probably in for an ER-type experience except her room where we wait in Long Beach is larger and the ride to UCLA's 6th floor neuro unit is longer. Susan may be in for another multi-day stay to diagnose, treat, and observe, hopefully with a mere shunt adjustment.
From there the good therapists in Long Beach are eager for her to return and pick up acute rehab without anything working against her. The journey continues. We have peace.
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After
a report of Susan vomiting on Tuesday afternoon during therapy got my
attention, two more episodes on Wednesday gave me concern. Another neurological
hit could mean a shunt failure, brain bleeding, or several other serious but
less urgent problems. She was less talkative on Tuesday evening, needed maximum
queuing during therapy, and had been staring at her food rather than feeding
herself. These are not good signs.
The
attending physician in rehab ordered a brain CT scan Wednesday, which
thankfully appeared to rule out our most serious concerns. But as Susan’s
advocate, I wasn’t satisfied. While I didn’t doubt the LBMMC radiologist’s opinion
of that scan, I knew it would be more meaningful when compared with the others
recently done at UCLA. I requested a CD copy, picked it up Thursday morning,
and delivered it to Dr. Nghiemphu at UCLA. She emailed me later to say there’s
no remarkable difference between it and Susan’s prior scans, but she’d have the
neurosurgeon view it as well.
With
good news confirmed, we still didn’t have anything actionable for Susan’s
symptoms. Fortunately, she’s had no anti-nausea meds since Wednesday night and
no vomiting either. She still seemed affected to me last night, but maybe she
was just tired. Nurses reported a good day in therapy. We’re left without
knowing anything conclusive about her mid-week slump other than it seems to be
resolving, so that’s good. She may be experiencing a residual effect from
having a tube implanted in her brain, or perhaps from last month’s chemo. Or both.
I’ve had to become uneasily comfortable not having all the answers.
The
plan is for Susan to come home next weekend, perhaps even Friday. We’ll take a half-day
jaunt on Wednesday to UCLA for chemotherapy. Hopefully, she’ll be able to make
the best of her remaining therapy hours and come home well enough for us to
care for her safely here.
Susan’s
absence reminds me of 2008 when she was in rehab for three months. I think
I miss her more now after just a week than I did then, perhaps because now I
wonder what our home would be like without her when she goes to heaven. This is
not a hopeless thought, just a hard one. My consolation comes when I see her
again at her bedside, kissing her forehead and saying I love her. Being able to
do that is actually a great gift, as though I’ve lost her and have the miraculous
opportunity to see her again. I expect this will comfort me on the day I need
it.
Meanwhile,
the Living God never slumbers or sleeps and is constantly working out his good
purposes for us. Susan drank in these words from Psalm 57 when I read them to
her last night:
“Have
mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will
take refuge in the shadow of your wings until the disaster has passed. I cry
out to God Most High, to God, who fulfills his purpose for me. He sends from
heaven and saves me, rebuking those who hotly pursue me; God sends his love and
his faithfulness.”
Susan
usually can’t tell you what day it is, but she received God’s word for her, looked
me in the eyes, paused a few moments, and said, “That’s perfect.”
After
a few days ramping up and being evaluated, Susan had her first full day of
physical, occupational, and speech therapies today. She was in good spirits
this evening as she ate dinner during my visit after work. I’m not sure if I
ever met anyone with a better disposition, more easy-going, less grumbly, more
hopeful, and more patient than Susan. She just goes with it. I’d have tried a
jailbreak or two by now if it were me. Not her. She’s calm, sweet, and majorly
strong.
As
I speak of her strength of character, I was amazed on Saturday how much
physical strength she’d gained just in the couple of days since she arrived. As
Michelle the physical therapist did her evaluation, she tested for strength,
flexibility, and initiation of movement as she led Susan to lie down and get up
from a bed and then take a few steps with a walker. The strength is returning to Susan's right arm, so she's able to lift it more and grip things slightly.
The
therapist is recommending she stay in acute rehab for three weeks, so if
insurance is on board for that long, she’ll come home greatly improved. Meanwhile, we visit
each day and look forward to her coming home. I can’t deny I’m relieved myself during
this respite from the routine and responsibility of caring for her at home, so I’ll
use the time for some caregiver rehab. I keep thinking about Psalm 54:4, “Surely
God is my help; the Lord is the one who sustains me.” He’s got it all worked
out.
After several days to recover from surgery, Susan transferred to the rehab unit at LBMMC yesterday evening. She feels okay and will begin her physical, occupational, and speech therapy evaluations this morning, which will indicate how long she may stay.
She's slated for three to six hours of therapy daily. We're thankful for good progress and answered prayer.
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