Another Bump On The Bumpy Road

last Saturday April 22^nd  Earth Day

I ended up in the Emergency Room

the night before I spent an hour in bed

quivering

teeth chattering

right leg twitching with muscle pain

it might have been two hours

felt like forever

but then I fell asleep

in the morning

I felt better

but by afternoon

I was burning up

Jackie took my temperature

it was 102

We left for the hospital

Howie with Jackie and me

Andrew following behind

once there the testing

and needles began

first diagnosis-UTI

admission and off we go. . .

*

Snippets from a hospital stay:

it’s time for bed

11pm room 131

Bozeman Deaconess Hospital

I can’t get comfortable

my hands on the pillows

curl into balls

I can’t relax

Jackie gives me

my homeopathic anxiety drops

I am scared of the night

*

Dr. Herring

The first hospitalist
very attentive
his voice
as he discussed
my situation
put me to sleep
every time
he set me up
for recovery

*

Dr. Sauerwein

tall, confident, quirky

wearing a funny surgical hat

looking and sounding like Henry Kissinger

Bjorn Sauerwein explains to us

my bladder has been weakened

by the ALS

it can no longer

store my pee

which explains why

I have had so much trouble urinating

my urine has backed up

into my kidneys

causing an infection

he will need to see me in his office

once the infection has cleared

in the meantime

I have a new internal catheter

which immediately drained

a huge amount of urine

relief

but no more peeing for me

*

CT Scan and Swallow Study

it was very difficult

to hold my breath for the CT scan

it took a lot out of me

especially after the slide board transfers

then I lay in my bed in the hall

waiting for the swallow study

broken air mattress deflating

while the anxious techs ran around

looking for yet another spare battery pack

another slide board transfer

to a chair that laid flat 

then went upright

for me to sit in front

of an x-ray machine

where I swallowed poison  

in various consistencies

in order to get a better handle

on my eating and drinking abilities

*

Cheri, Speech Therapist Extraordinaire

(aka Dragon Lady)

wearing a colorful

fitted lead dress

and special x-ray glasses

told me the bottom line

that I am aspirating

when I swallow

and now had the x-rays

to prove it

*

Dr. Sullivan

the pulmonologist with a belly

and a mustache

continuously tells me
I am doing great

on the non-invasive ventilator

he is very impressed

considering how difficult

it was for me at first

he often repeats himself

our conversations circle around

my need for a feeding tube

how strong my voice is

my ability to use the ventilator

my weakening diaphragm and lungs

my ability to survive

the procedure to install the PEG

what to do if things go south

whether to get a trach or not

he smiles a lot

talks too much

makes me anxious

but he is doing the best he can

he has a very difficult job

I am not an easy case

though I am an easy patient

*

The Hoyer Lift

they roll you over on the bed

put you in a canvas sack

the nursing staff all joke

they have done it

themselves in training

but I doubt they ever

got hoisted from a hospital bed

to a commode

with their bare butts

hanging out of a hole

backed up, arms useless

in the way, stiff and in pain

they kept remarking

how it was like a hammock

but it’s no backyard swing

on a relaxing Sunday afternoon

*

OT/PT

Brooke or Carly

part of my OT team

came by every day

to work the stiffness

out of my arms

sometimes they came

with Tamara, the red-shirted

head of in-patient PT

I have a good memory of Carly

stopping by with another

red-shirted PT

who worked my legs

while Carly worked my arms

soon after I got a ride in the hoyer lift

‘cuz I had to go poop

*

Dr. Marley

Dr. Marley listed every drug in the world

every pain killer

every pain blocker

young and knowledgeable

a typical hospitalist

who knows nothing about you

to change the subject

I asked him where he went to school

big boyish smile

Jackie gave him my blog address

he turned out ok in the end

*

The Nurses

Tina 

my first night

gentle and strong

confident and not afraid

of this complex patient

burning with fever

she set me up in bed

with pillows

I slept on the ventilator

for three straight hours

she was my nurse again

a few days later

feeling much better

she insisted on taking me

outside for fresh air

Allison

her mother-in-law, Lois

used to work for us

Allison was in charge of my enema

covered the bed

with a hundred quilt and chuck pads

she also gave me a suppository

and had to deal with my emptying out

Becky

my night nurse

for three nights in a row

she was great at

setting me up

on my left side

perplexed by my inability to sleep

and wanting me out of pain

she offered me norco every four hours

Kelsey

a full time nurse

a full time hairdresser

mother of teenagers

she was my nurse one day

my case manager the next

instead of “I voted today” stickers

she thinks we should wear

“I pooped today” stickers

every time I pooped

I got a kiss

Andrew

the only guy

rock solid

never assigned to me

he inserted my catheter

asking me if I could

feel things down there

when I told him yes

he numbed me up

asked me if it hurt

well it’s not pleasurable

we all laughed

Katie

awesome positive energy

night nurse for the last two nights

I didn’t sleep well either night

but no fault of hers

the first night

I had a bad reaction

to Adavan which I took  for sleep

on Dr. Marley’s recommendation

I kept saying I was lost

felt anxious, couldn’t sleep

another drug

working backwards on me

Katie massaged my feet

for over an hour

she and Jackie

bonded over my bed

sharing stories

Katie met her boyfriend

when his car broke down

in the town in Michigan

where she lived

He left for his summer job out east

but turned around an hour later

back to Katie

I don’t blame him

*

Dr. Popwell

Dr. Popwell was talking about

palliative care and acute hospital care

“waaa waaa waaa waaaa waaa waaa”

I was falling asleep

it was serious and well thought out

but it was time for him to stop talking

I told him

you’ve talked enough

we all burst out in laughter

then I told him I appreciated his care

he was in tears

I can tell he cares a lot about me

*

Our Angels

they visited me one by one

filling up our room with love

brought us enough food

to feed an army

some of them helped us

navigate and understand

the doctors’ words

marking the future

friends I hadn’t seen

in months even years

appeared with tears in their eyes

Jonell came with Peyto

who on arrival vomited

on the floor of my room

admitting physician, Dr. Gaylord

a sweet man from Texas

stopped by in his street clothes

on his way home

to check on me

remarked how my positive attitude

was key to my recovery

and my daily life with ALS

Tracy on her birthday

Gail every morning

Alex every day after school

Josh and Debby with dinner every night

Curly who is always there for me

Barbara and the Middleton family

taking buddy for the week

even getting him groomed

Rita coming by

to trim my nails

on departure day

Nettie, Dan, Taylor,

Patty, Candice, Tim

cards from Jayden and Brodie

flowers from Leslie

a super soft blanket from Rachel

Soup from Shannon

home repairs by Tim S

Louis, my oldest brother arrived

just in time to help take me home

*

Rabbi Ed

we texted him to come after six

he showed up at four

joining Alex, Curly and Louis

he asked me how I was doing

and then asked if I had

written my ethical will

I have not

but I told him

I want to be buried

not cremated

he wanted to know

If I wanted a traditional

Jewish burial

with the ritual of tahara

He told me about a “green” burial

where you are buried in a wicker basket

he told me that cremation

is a major cause

of greenhouse gasses

in the world

eventually he went to find Jackie

who was having an intense

conversation with Dr. Popwell

at the end of the hall

when he arrived

after a few minutes

I looked at Alex , Curly and Lou

and said

give Jackie a break

go tell the Rabbi

I’m dying

*

Jackie

six days and nights

together in a 200 square foot room

she never left my side

need I say more

*

Home At Last

made it home in time

for Howie’s birthday

and the Mets Nats series

a pile of cards

I still haven’t opened

Buddy and the cat happy to see us

the clean house

made ready by Candice

it’s good to be home

but I still have ALS

my nervous system

has no patience

my useless hands

cannot tolerate touching anything

plastic or metal

nerve pain in my right wrist

my shoulders, biceps and triceps

still tight

the gabapentin helps

but makes me groggy

intestines still angry

still it’s good to be home

Tracy sent us a photo

of a local family

also touched by ALS

who were in California

at a fundraising walk

the large family

were holding signs

one of them read

we love Marky Moose

made by Aaron

our sweet produce manager

signed by staff, vendors, customers

carried to California

by Whitney

seventeen years ago

we were at Bozeman Deaconess Hospital

on April 28^th waiting to get a medical induction

it was a busy day

in the under renovation

maternity ward

we had to wait

until 11:30 pm

before Dr. Wong

could induce Jackie

Grandma Peggy in charge of Andrew

Tracy in charge of Micah

four hours later

we all met Howie

now he is taller than me

helps take care of me

he is a young man

spent the week

home alone

getting to school on time

studying for AP exams and the ACT

we celebrated his birthday

a fajita bar

and chocolate moose cake

prepared with love

by Lindsie, Jamie

and our CK crew

Tracy and the kids

Wades and Schumachers

Ethan Schumacher

born just a few days after Howie

they had their first sleepover at BDH

I have spent

most of my first few days at home

writing this with Jackie

exhausting

but so necessary

for my well-being

the bumpy road continues