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?
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.
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.
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.
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…
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.
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