The tapestry of the life of a medically complex family

Archive for the ‘poem’ Category

Midnight In the KPICU

Set down my friends & you will hear
The midnight nebs we do revere

The pulsing PARIs thump the floor
Albuterol works magic more

A cough, a sneeze, but rare awake
Misty medicine breath intake

The final checks across the room
Re-fill compressors for the two’em

Meds run out, I make the switch
Mist back on & then neb rinse

Check respir-rate, sats & heart
Climb to loft, sleep-vigil start

4, 5 hours wait for beeps
Hoping none while 3some sleeps
Ever watchful of my peeps

Good night!



I dream of haircuts and dinners out
Of trips to amusement parks
And walking about

Of having a life beyond this small room
Vacation, independence,
And friends for each too

Hotdogs at the ball field
Sweaty seats on the T
Dreaming of normal that ne’er may be
Sprained ankles from skates
Tapping my wrist when arrival home late

High school and homework and


Nebs & meds & feeding trials
Greetings, hugs & beautiful smiles
Play & read & interact
Teach & learn, health status track
Bathe & complete trach care/change
GTube placement check, rearrange

Mid-day food may take so long
Mid-afternoon stretch & dance to song
Health assessment again at least
Add on treatments to stay “the beast”

Oops! Snack’s late! Run to kitchen.
Calories tracked, must get all in.

BARELY time to do much else
Place the toys back on the shelf,
Craft some dinner while they draw
Food refusal daily flaw

Meds, brush teeth, toilet rotation
Return to beds for neb medications
Pure exhaustion & anxiety spikes
Try to adjust things to his exact likes
Then 3 pass out, sleeping sound
While my continued work abound

Feed up, nebs clean, then the dishes
Wish all was done with goodnight kisses
ALARM!! Move child. Adjust the lines.
Add oxygen? Lung sounds? Write down finds.
A few repetitions of the same theme
Tiredness sets in but can’t yet dream

Feed stage 2 prep, change it over
Observe for delivery, let out ‘rover’
Wash the prep tools, counters, table
Try to nap hours while you’re able.
Every few hours check all of them
Awaken morning to begin again.

Patrick’s Sunday




Our St. Patrick’s Day adventure- on a bitter cold New England day.







Seriously- Romance?

I sign on for the National Poetry Month Blogroll at BlogHer and their prompts already have veered far from my life. The best romantic poem? Seriously? Who reads those? More importantly: who CAN read those??

Don’t get me wrong, I have LOTS of love in my life- just none of a romantic nature. My children love me to the moon & back, & I them. Some of my nurses love me, in addition to loving my kids. They show this through their thoughtful encouragement for the day-to-day, in baking for friends & being sure to bring me some, by repairing a broken screen door during the overnight shift. My kids’ biological and adoptive families share love with us all the time, but “romance”- LOL

At one-point, a few friends suggested I post a profile on an online dating site- they even began crafting my profile description. In keeping with the “spirit” of the BlogHer challenge, and honoring poetry in my posts all month long, here is my version of my poetic personal ad:

SWF likes:

Leisurely strolls through hospital halls

Internet shopping, not crowd-filled malls

Long, 3-4 hour, grain-free meals

Ortho-clogs, ne’er spikey heels.


Tall & smart & kind & stressed

Medical emergencies at her best

Many children at her knee

Happy, smiling, busy bee



Kind & strong & loving man

Medical training a plus my friend.

Helicopter pilot a valued skill-

Quick land on hospitals for a thrill-

Soft of heart & quick of mind

Cherished partner love to find.


Not thinking it would work, but there it is: romance. 🙂

So Happy Its Tuesday

Today’s another wheezy day

Reduction in their time for play

Nebs on meds on nebs again

The Vest, some care, neb number 10


Top of hill there’s feeding woes

Slower than the sloth it goes

7 hours every day-

How long can feeds go on this way?


Love and hugs and play and song

Are fit between the meds along

Bedtime pause, sing one-on-one,

Then more nebs ‘fore day is done.


Lest we rest, we do not dare,

Pause in loving complex care.

Future hopeful, but unknown,

Days are PICU in our home,


Memories are made each day

Special moments on the way

Ne’er forget to cherish each

Love each other, this do teach.