The tapestry of the life of a medically complex family

Archive for the ‘kids’ Category

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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A Beautiful Day

I see the pictures-
Fun
Sun
Runs
Health

I watch the updates-
Plays
Vacays
Displays of wealth

The wealth of health, the posts abound.
But for chronic ill, challenge astound.

The sun & warmth is just a tease
Sailing asthma on the breeze

Constant nebs, more o2,
Lack of energy, muddle through

Love all 3 babes, hate their strife,
While they live the medical life.

-GK, 4-12-2014

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.”

Night Nurse Day

With my trached twins & youngest with breathing, GI, ortho & neuro challenges, you can imagine my house is a pretty busy place. The twins are approved for a lot of nursing hours but on average I get 20hrs of coverage. There are school vacations, special training at their “day job” & a host of other reasons a nurse might miss multiple shifts a month.

Since July, I have only met with one nurse referred by the agency. He was “miraculously” unavailable for ANY shifts I wanted filled & only ones that were partial & inconvenient (come after & leave before meds…?) as soon as our 4hrs of training him had ended. I have not had a single night of nursing since late July. It is now late January.

For me, it wouldn’t seem so bad if it wasn’t for the fact that my kids have been sick for FOUR FULL MONTHS of that six months. They went on “sick plan” the first week of August & stayed on it through October- with 10 inpatient days in September for all 3. They took antibiotics & long steroid tapers & finally seemed “better” the first week of November.

After about 2.5 weeks of regular meds, “sick plan” was reinitiated. More steroids after an ER visit for one, antibiotics for 2. We stayed home for Thanksgiving, unable to pause nebulized meds longer than 4hrs apart.

Maybe things are not clear to everyone but “sick plan” is a MINIMUM of 2-3 nebulized medications, 3 times daily. The minimum is 8 nebulized medications per child, times 3 children. (When a nurse comes, s/he covers 6 for 2 of the kids, max). Most of this fall, the kids were on additional nebs- every 4-6 hours for bronchodilators, and 2hrs for normal saline nebulized in between for the twins during the day- and some nights but then we went inpatient. There are the regular oral meds too & additional doses of steroids and antibiotics.

And there’s cooking & cleaning & reading & laundry & bedtime & cuddles…

Yah. Exactly.

So when a nurse came last night- because our 28hr/week day nurse has been out sick half every recent week… Some friends thought I’d fall dead asleep & not wake up until he was ready to leave. No. Such. Luck.

After 6 months of 20-hr days, there is no “instant off”. I actually had a HARDER time sleeping than usual because I wasn’t in the same room as the compressors & alarms & cacophony that usually lulls me into my 3-4 hours/sleep a night. Last night I got less than 3.

Hoping for a nurse on Friday…

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