The tapestry of the life of a medically complex family

Archive for the ‘Medicine’ Category

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.

Midnight In the KPICU

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

Good night!

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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Lyfe

Morning
Nebs & meds & feeding trials
Greetings, hugs & beautiful smiles
Play & read & interact
Teach & learn, health status track
Bathe & complete trach care/change
GTube placement check, rearrange

Mid-day food may take so long
Mid-afternoon stretch & dance to song
Health assessment again at least
Add on treatments to stay “the beast”

Oops! Snack’s late! Run to kitchen.
Calories tracked, must get all in.

BARELY time to do much else
Place the toys back on the shelf,
Craft some dinner while they draw
Food refusal daily flaw

Meds, brush teeth, toilet rotation
Return to beds for neb medications
Pure exhaustion & anxiety spikes
Try to adjust things to his exact likes
Then 3 pass out, sleeping sound
While my continued work abound

Feed up, nebs clean, then the dishes
Wish all was done with goodnight kisses
ALARM!! Move child. Adjust the lines.
Add oxygen? Lung sounds? Write down finds.
A few repetitions of the same theme
Tiredness sets in but can’t yet dream

Feed stage 2 prep, change it over
Observe for delivery, let out ‘rover’
Wash the prep tools, counters, table
Try to nap hours while you’re able.
Every few hours check all of them
Awaken morning to begin again.

The Gift of Special Needs & Illness

I was chatting with another Mom to a child who will not outlive her. It is a difficult awareness that we live each day. A difficulty that is not without its own gifts for we who live it.

I think one thing about our kids:
It won’t always comfort us, but their strength through all this adversity, their joy, their sweetness, their ability to draw people into our lives who understand- who love us & them- that legacy will stay with us when we no longer have them with us physically. YOU, other parents of children LIKE mine & different from mine… it’s a gift my children have provided that will outlive them.

Bittersweet gift, but a gift for which I will forever be thankful.

Staring

I cannot stop staring at her hair. It is thick and blonde and perfectly coifed. It is the kind of hair that begins partway forward on the forehead. It is PERFECT today. And I cannot stop staring.

Her mouth is moving – telling me she has breast cancer. She is scheduled for a second opinion & surgery next week. She needs time off from helping my child to address this devastating health issue. I nod. I gulp. I think of her 9 & 11 year olds, her husband.

And I can’t help staring at her hair.

Tally

After another full week without a nurse shift, I feel run down and ‘finished’ but ‘unaccomplished’. As with parenting in general, being a parent of children with complex medical needs is a never-ending “To-Do List” with medical treatments & status assessments tacked on to the page. Sometimes it helps me to glance into the rear-view mirror at the end of a long week so I can truly appreciate that I did get some things done.

This week without nursing I have ensured that 3 complex kiddos have received every dose of their medications & supplements. These doses include: 6 doses each of Xoponex & Duoneb via nebulizer; 6 doses of Nexium; 12 doses of Dulcolax & Singulair;14 doses of Albuterol via nebulizer; 16 doses of Hypertonic Saline via nebulizer; 17 doses of Prevacid; 18 doses of Miralax, iron, multi-vitamins & Vitamin D; 36 doses of Pulmicort via nebulizer; and probably 40 saline nebs since last Thursday… I have done 36 Vest PT treatments of 20 minutes each and listened to lung sounds at least twice daily per kid for the last 6 days (36 times). I have only taken temps on a couple of the days the kids seemed to be “brewing” something- maybe 3-4x per kid so 10-12 times.

I have prepared 3 homemade meals & snacks every day & calculated calories to be sure to make individual daily totals. I have made homemade peanut butter formula each day and calculated individual volumes to be sure each child gets their minimum formula calories, as well as other fluids to meet daily needs. I have set-up a GTube feeding each night, flushing my son’s GTube before & after each start & stop of the feed. I have gotten up to toilet my Tubie 2x per night, every night, as I am sure will continue tonight. Toileting involves: awakening, shutting off & removing the oximeter, shutting off the feed pump, clamping the line, extension & Ferrell bag & flushing the extension, removing the extension, removing mist & attaching an HME to the trach, then FINALLY taking him out of the crib to go toilet. Returning to the crib requires the reversal of the complicated process. Most often my 45lbs son wants to be carried back&forth to the bathroom at the back of the house because he prefers to stay half-asleep during this process. On a rare occasion, my daughter with a trach has also needed to be up for toileting- at least with her there’s no GTube feed.

The overnights this week have not been uneventful. My daughter’s oximeter plug became loose and alarmed when the battery ran low. Her oximeter probe died one night, needing to be changed around 1:30am- of course. :) My son has required supplemental oxygen on 3 of the last 5 nights- hmm, maybe something IS brewing… He has the 3/4L he wears every day, all day, but has required 1-2 Liters per minute on those 3 evenings, including last night. I have changed over the regulator onto full tanks for the 5 tanks we went through this week “living life”.

I have done almost no laundry except the one emergency load of pajamas that was unavoidable. I really hope we can raise the funds we need to move the Washer/Dryer upstairs & fix the electric. It’d be great to gave thrown in a load or two during other days.

I have gone to 3 appointments. I followed up with 3 clinics on medications and changes for 2 of my children per clinic. I have addressed acute issues for 2 of my kids with their GI & pediatrician. I have fought with our DME over their need to deliver the trachs we ordered at the end of February. I have dealt with the fridge repairmen for nearly an hour on the phone- and am faced with another delay.

We have completed homeschooling tasks, played games, made beds every day and had dance parties or done stretches. We have played outside on the deck and adventured out in the car to drive along the coast on a brisk New England Sunday. My kids saw their first lighthouse, Coast Guard station and surfers. I have shoveled a foot of snow off steps & the deck. We visited one of our former nurses and her beautiful new baby.

Whew! No wonder I feel tired! It’s been a full week for 1 Momma, 2 twins with 2 trachs, 1 GTube & 1 5yr old. There is still more to do before the nurse arrives tomorrow morning. On to lunch!

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