The tapestry of the life of a medically complex family

Archive for the ‘Family’ Category

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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Caring for my sick

Caring for your child with complex medical needs is a 4.2 FTE position. When you have a nurse, it’s not “time off”, it’s more like “double-time”. When there’s a nurse, they can administer & assess while you call for medical equipment & supplies, doctor or clinic follow-up, prepare or repair equipment, or DO LAUNDRY!

I have very little nursing. My kids qualify for 133 hours per week due to the intensity of their complex medical needs- correction: my TWINS qualify. The agency we have access to fills 29 hours. Yes. You are reading correctly. 104 hours a week of un-filled shifts.

Do you know who fills those “shifts”? And there’s the other complex kiddo… 104 unfilled nursing hours x2 trachs & 1 GTube. 35 hours a week “officially” mine. And 168 hours of my 3rd, HIGH asthma & GI need kid. 446 caregiving hours/week to myself. And there’s other “Mom” things. No wonder I’m tired- nay, “exhausted”.

My late night weekend party? At 2am it looks like this:

Build kit. Attach tube. Pour med. Attach mask. Turn on machine. Run neb.

Build kit. Attach tube. Pour med. Attach mask. Turn on machine. Run neb.

Build kit. Attach tube. Pour med. Attach mask. Turn on machine. Run neb.

Refill mist bottle for trachee #1.

Refill mist bottle for trachee #2.

Shut off neb. Remove kit.

Shut off neb. Remove kit. Re-attach mist.

Shut off neb. Remove kit. Re-attach mist.

Rinse neb kits / wash parts x3. Do NOT cross-pollinate. Place in baskets to dry.

Return to bed for 4-5 hours… Will I fall back to sleep?

Life. Caring for my sick. Caregiver/parent fatigue.

Oops. Oximeter alarm. Got to go.

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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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Fishbowl

Dear Distant Eyes Beyond Our Bowl:
We’re different, special, but stop patrol!
Your judgment hurts us more than too
Our lifestyle choices for health do.
Our lives are not desolate spans
With moat around our modest manse.
We bake, we play, we go to beaches.
We sing, we dance & Momma teaches.
We SKYPE. We see. We swing on swings.
We venture out in health or springs.
We visit family, play with pets,
Eat rest’rant salad, point out jets.
In winter: shovels, snowballs, sleds,
Skiing, snowforts, cozy beds.
Building, learning, having fun-
Our family life a VALID one.
View our year in picts below-
Maybe one day try & know
Your view is cloudy- narrow best-
STOP the judging- give it rest.

- DONE

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Fayle

I’m not the Mom I want to be
I live a washed up shell of me

Meltdown, treatments, medical test,
No time a weary Mom can rest

We rush about, see this one, that,
Parenting in a Chauffeur’s hat

Trach & Autism behavior peak
Count 1000 before I speak

Restraint, a treatment, then some more
While no support rings at the door

The love I have is ne’er enough
Complex medical kids are tough

Enjoyment, solace, that I wish
Will it never come for this?

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.

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