The tapestry of the life of a medically complex family

Archive for April, 2012

Why is it

Why is it only WE see the challenge everyday?

The data sent and then reviewed

Does not impress they say.

It’s all okay.”

We see fatigue, high breathing counts and work.

Add oxygen for mild improve, yet I feel the jerk.

If “no concern” is true with data view,

what do WE see?

What stresses boy and causes all the witnessed lethargy?

Outdoor Play

Getting outside more has been a goal of mine for some time now. This week, I finally got some time with a nurse so that I could go get the final pieces of wood and hardware for our latest outdoor adventure. THESE are the faces of SUCCESS!

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OK. Most of you know both acronyms but let me open with a warning: GI = Gastro-Intestinal  for those who don’t know…

Why do I hate GI? Because it is the ONE specialty we see where everything boils down to “MY fault”. Regardless of what unknown family history or yet undetected medical condition that adds to the current picture: GI function is largely seen as based on what is put in. And I am the gatekeeper of all that is “put in”…

They see neurology, pulmonary, ENT, opthalmology, have seen cardiology and complex care. SO many of the conditions for which my kids are seen are directly related to being bathed in the brine of an unhealthy womb, their issues relating back to prematurity [27 or 33 weeks] and being born with cocaine in their systems. These issues are those over which I had NO control, share no blame.

But: GI/nutrition? I make the food. I GIVE the food. I decide what is bought at the grocery or abroad for my kids… This responsibility gives me all sorts of culpability for the events of the stomach and colon follow-thru.

Each day I battle to coerce my children to ingest enough calories to GAIN weight. When they stagnate, it is my blunder. If they lose, the blame is mine. When they drop off the growth curve, I have failed at one of the most essential functions of parenthood: nourishing a child.

In addition to the “feeding wars”, I coach at least a couple of my children through the “delivery” of their daily BM. “Push!” I encourage. “Breathe. Wait a minute. Then push again.” Pause. “Another minute & push again.”… “Relax for 2 more minutes and you will be done.” “Just 4 more pushes.” How the HELL did daily bowel function become the thing of “labor & delivery”? In my heart & mind, I only ever really dreamed of uttering this coaching at the delivery of my grandchildren, alongside my son- or daughter-in-law if my daughters choose to include me…

6 hours of direct feeding, a half hour of “delivery”… my day is filled with “guts & butts” in a way I never fathomed at the onset of parenting. And that it is this convoluted at the ages of 6, 6 & 4.5 years old…

Docs suggest medical interventions, from medications to stimulants to surgery, but voice mostly that these things are “urgent”, “need rapid correction”. They state the restricted diet is unnecessary but agree they cannot argue when vomiting and diarrhea are no longer a problem. They note that our way of eating contains “significant fiber” but that it is “ineffective” in supporting a couple of my children to have more normal bowel function. ONE of our providers has gonesofar as to state that a “GTube placement in a child this age is just a sign of parents ‘not doing the work’” of feeding their child well enough to gain & grow. Nearly every food item my kids eat is prepared by my hands, so few items can be store bought to meet the needs of SCD. It is no wonder I feel the burden of guilt.

We have worked with skilled & caring GI professionals throughout my kids’ lives but not one has been effective in lifting the weight of blame off my shoulders. Not one has been able to relieve my anxiety of returning to their clinic for another visit to record the lack of progress for my children. Few even think to commend the daily effort. GI is the black mark on our “complex medical progress report”- and it’s been added to our quarterly rotation. <SIGH>


Seriously- Romance?

I sign on for the National Poetry Month Blogroll at BlogHer and their prompts already have veered far from my life. The best romantic poem? Seriously? Who reads those? More importantly: who CAN read those??

Don’t get me wrong, I have LOTS of love in my life- just none of a romantic nature. My children love me to the moon & back, & I them. Some of my nurses love me, in addition to loving my kids. They show this through their thoughtful encouragement for the day-to-day, in baking for friends & being sure to bring me some, by repairing a broken screen door during the overnight shift. My kids’ biological and adoptive families share love with us all the time, but “romance”- LOL

At one-point, a few friends suggested I post a profile on an online dating site- they even began crafting my profile description. In keeping with the “spirit” of the BlogHer challenge, and honoring poetry in my posts all month long, here is my version of my poetic personal ad:

SWF likes:

Leisurely strolls through hospital halls

Internet shopping, not crowd-filled malls

Long, 3-4 hour, grain-free meals

Ortho-clogs, ne’er spikey heels.


Tall & smart & kind & stressed

Medical emergencies at her best

Many children at her knee

Happy, smiling, busy bee



Kind & strong & loving man

Medical training a plus my friend.

Helicopter pilot a valued skill-

Quick land on hospitals for a thrill-

Soft of heart & quick of mind

Cherished partner love to find.


Not thinking it would work, but there it is: romance. :)

So Happy Its Tuesday

Today’s another wheezy day

Reduction in their time for play

Nebs on meds on nebs again

The Vest, some care, neb number 10


Top of hill there’s feeding woes

Slower than the sloth it goes

7 hours every day-

How long can feeds go on this way?


Love and hugs and play and song

Are fit between the meds along

Bedtime pause, sing one-on-one,

Then more nebs ‘fore day is done.


Lest we rest, we do not dare,

Pause in loving complex care.

Future hopeful, but unknown,

Days are PICU in our home,


Memories are made each day

Special moments on the way

Ne’er forget to cherish each

Love each other, this do teach.



First Poems

In trying to participate in the NaBloPoMo Blogroll this month, I guess veering from their first suggestion mightn’t encourage me to keep writing this month. My first poem I remember memorizing may have been “Hickory Dickory Dock”… It has been a very long time. I have memorized so very many and written many more since then.

When I was a child I went to a parochial school so we memorized many poems, prayers & other religious  litany. During my time in elementary school, I also wrote many poems. I remember being the student chosen to write a poem for an Easter service, and having it done up in calligraphy by our class’s most talented artist.

One of the poems I wrote in elementary school was accepted into an “American Poetry Anthology” when I submitted it during late elementary or early high school. I don’t remember which one and have not ever seen a copy of the text but I remember the poem. Short and reflective of where I was in my life at the time:

This little flower, Alone on a hill

Watching & waiting for a message of God’s Will

Be like this flower, Ye children of God

And watch, It is not a bed of flowers on which your feet trod.

[Gretchen Kirby, circa 1976]




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