The tapestry of the life of a medically complex family

Write

There are reasons I haven’t written –
None of them good.
Each of them valid
In their own esteem.

Not sure WHEN –
Or if I’ll return –
HOW?

I have been thinking.
I have been introspective.
My journey continues.

The challenge. The joy.
The angst.

We are near healthy,
Never well.
But whole & safe.

GERD is SO Much Fun

After a late morning albuterol/ ipratropium round for wheezing break-through, my kids began playing ‘clinic’ with the teddy bears from their beds.

As they prep my son’s bear for a ‘procedure’, my youngest picks him up, places him close to her nose & SNIFFFFFS deeply. “He smells TERRIBLE!” she says before stuffing him under her sister’s nose & asking her to smell.

SNIFFFFFF goes my older daughter. “Ew! This bear smells GROSS! Smell it Momma!”

As she hands me the bear, I realize the leg is moist. Keeping it a good distance from my nose, I sniff lightly.

UGH!!! Vomit. The bear’s leg smells like VOMIT.

Thanks, GERD & overnight GTube feeds. Thanks very much.

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Creating & Building

My Dad has been dead 18 years this summer. He had a favorite sweater I remember especially well. This week I made it into a house-warming birthday gift for my youngest brother. Favorite sweater, handknit by Mom, will soon become a coordinating item. I love to upcycle.

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The kids had some adventures in creating this week too. There are Valentines to deliver and Tic-Tac-Toe to play. Trachs, kids & hammers…

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Bitties

My kids declared today:

“National Bitty Baby Day”

They have been playing with their Bitty triplets all afternoon. First they dressed them in matching outfits & “took them swimming”. Later the Bitty 3 dressed as ghosts using the doctor coats my kids have. Now the dolls are ill and receiving skilled medical care from my 3 little pros. So glad they are happily amused.

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My three youngest sit talking at the table.

My son says: “When I’m big, I’m gonna marry Momma.”

I ask him why- what about me makes him want to marry me. He says: “Momma, you’re LOVELY!”

His twin plans to marry the son of one of our former nurses- because the nurse “will be too OLD to marry me when I’m grown up”.

My youngest states: “When I grow up, I’m gonna marry (my biggest brother). I’m gonna grow up … & MARRY HIM!”

When asked why, what is he like that makes you want to marry him?

Her response: “Bacon. He’s bacon.”

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!

New Year 2014

2014 came in with an illness bang. Lower sats across the crew & 4L of oxygen for one were the elements of my New Year’s Eve celebrations. 2 days of 6-hour scheduled nebulized medications seem to be working their “magic” & today lung congestion is rampant but oxygen requirements are back nearer to baseline. I am really hoping this is the “turn” of this illness & we’ll be down to 8hr meds & oxygen baseline by the weekend.

This year I hope to blog more- not to high a bar considering there were only 45 posts last year! Be prepared fir updates & poems & cuteness. šŸ™‚

Hoping for a Happy & Healthy New Year for all of you & yours.

My “Big Kids” of 2014

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