The tapestry of the life of a medically complex family

Archive for the ‘kids’ Category

Memorial Day Modified

Often families of a child with special healthcare needs will celebrate holidays or family events in ways that are different from others. My family has 2 children with trachs, one on full-time oxygen, & another who has severe asthma & heat & exercise intolerance. These health characteristics change the way we celebrate but do not lessen participation- different, not less.

For Memorial Day, we spent most of the day indoors, away from the heat & smoke from our neighbors’ fire pits. We grilled steak on the Foreman & made salad & veggies on the stovetop. We paused during our day to learn about the purpose of the day & talked about our family veterans to honor their memories.

It was a fun day, with many of the features of traditional celebrations throughout the USA. Just as your celebrations differ from the neighbors, we did it our own way.

Hoping your Memorial Day was a fun, family event. Thank you to the Veterans who have sacrificed for our freedom.

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TheUsual

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.

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 Youngest Plans for Marriage

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.”

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. :)

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

My “Big Kids” of 2014

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