The tapestry of the life of a medically complex family

Visual Space

I had to move a toy there. I took the fire station and moved it to the spot where his dog bed was until this morning. Each time I pass through the study, sobs escape, but having the visual space filled helps…

On May 3, 2002, our pup came home to live with us. 8 weeks old, 11 lbs, a 9th birthday present for my Eldest. Jake was so tiny we had to put boxes into his crate & cover them with a blanket to make the space feel comforting. He fit in immediately, playing & growing alongside his pal.

His first few years there were multiple moves but he was happy to be where his pack was, through every transition. 7 years ago we moved to our current home. He went from being a stay-at-home-alone dog, to a dog with a house full of kids, with nurses & me at home except for hospital overnights.

My oldest finished high school & went to college out of state. His visits brought increased excitement & unending smiles from Jake. After a visit, Jake would run to the kitchen with every next arrival to see if it was his buddy back again.

Jake turned 12 in March. Things were harder. Transport was difficult. He had mostly wonderful days, and some that were frighteningly awful. Until yesterday, bad days coincided with difficult travel, vet visits, an injury. This past week he looked tired. This past week he had less energy. Yesterday he did not eat and was very winded crossing a room.

He held on. He smiled at me every time I pet him. He smiled when I gave him my eldest’s pillow and looked to the back of the house. He was holding on to see his boy.

This morning was the hardest but we were together. Jake rode peacefully in the car- even sat to look out the window smiling. His breathing was ragged but he wagged his tail. He smiled and gazed lovingly at us. And now he’s gone.

He was a wonderful & sweet & happy dog. He provided comfort & comedy & joy to everyone he knew. He snuck his Petco Christmas presents from piles in the closet. He leapt off a 4′ patio edge into my sister’s pool. He was my loyal & ever-present friend for over 12 years. I miss him. I ache. I am thankful for EVERY minute.

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2 Years & STILL Screwed

Two years I have sacrificed my health, any semblance of life outside the playroom, having clean laundry on any kind of regular schedule. Averaging 4.5 hours of sleep a night, but never consecutive. Clawing at the soil on the edge of our cliff, trying to hang on. Eating oatmeal 2 meals per day while feeding the kids what they need for health & growth.

FINALLY I refinance. FINALLY I find a grant source to support some of the ingredients for my son’s whole food formula. And, in the last week, finally finding nurses for night time so that I may possibly learn what it is to sleep 5 hours at a time… With the 3 shifts I have on 2 weekdays, I might be able to grocery shop with just ONE vulnerable kid in tow…

And the insurance is dropping hours from my nursing schedule. If I have overnight nursing, I can’t have day shifts. If I use day shifts, it’s back to no sleep… WHY is it that we never make headway? Forget winning, how about having the opportunity not to FAIL?

:'(

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.

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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