Basekamp Laundry Mountain

The tapestry of the life of a medically complex family

TheUsual

May 15, 2014

By the time I have the help of another nurse, it will have been 129 hours since the last covered shift. The kids are on “sick plan” – 8 scheduled nebs a piece, with additional nebs for break-through wheezing or congestion. 29-30 nebs every day, on average.

Tonight, for the first time in 2.5 weeks, all 3 are getting oxygen saturation reading of 99-100%. Maybe I will be able to drop off to the “regular” of just 6 nebs/day.

5+ days. 150+ nebs. Our last time trying ‘baseline’, my youngest spent half the night at 89…

It’s exhausting but extra nebs is better than going in. Whatever this is, I want it knocked out of the park. A couple more nights, some really good days, maybe Monday.

Category:

asthma, kids, Medicine, Nurse, Preemie, Special Needs, Trach

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Write

May 14, 2014

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.

Category:

Environmental Challenges

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GERD is SO Much Fun

April 13, 2014

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.

Category:

Feeding, kids, Memories, Preemie, ROFLcopters, Special Needs

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Creating & Building

February 12, 2014

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.

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

Category:

Family, kids, Memories, Preemie, Trach, Twins

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Bitties

February 3, 2014

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.