The tapestry of the life of a medically complex family

Archive for November, 2010

3 in The Ward

As I lined up the third oximeter on the wool carpet in “The Ward”, I thought about how my life might very soon be all about this: 3.  All about 3 oximeters monitoring heart rates & O2 sats across 3 beds. All about 3 children sleeping in what would otherwise be a living room, because on 3 nights a week there is a nurse here watching them & monitoring them throughout the night. 3 kids needing nursing. 3 trachs- there- SAID. 3 trachs is what I am told may be the future. 3 trachs I will monitor, clean, protect and mother.

Central apnea that is persistent beyond infancy, beyond the age of 3, may one day injure her heart, limit her functioning, limit life. Am I afraid of a third trach, trach #3? No. The trach is NOT what I fear- I more fear NOT getting it and having needed it. I fear waiting too long to act and having a child whose heart is weakened who then needs to have a trach placed, under anesthesia, which is tougher on you when your heart is weak.  I fear walking into her room some morning or naptime, finding her blue, or cold, finding that the apnea persisted long enough that she could not recover. I fear the doctors deciding to continue to wait until there is no more waiting when the damage is done- waiting because they think 3 is too many for any family, sacrificing the health of the one for the perceived “good of the whole”.

Trachs are hard. Protecting an airway of a preemie from illness, insult, can be hard enough when there’s no direct access for disease or hazard to infiltrate. Once you provide the pathway, adding the life-saving medical device, you increase the risk, provide the avenue for easy-access. But trachs save. Trachs provide a stable airway for 2 of my children to breathe, making LIFE possible. If its a necessary support for #3, I say “bring it”… but can we wait ’til spring?

Random Stupid Candy Post

As though the title is not warning enough, I have to say if you are looking for a serious post on the joys or trials of our daily lives, today you will be sadly disappointed. Today’s post is not another of my inane and rhyming poems about life with trachs or reconstructive surgery- it is about M&Ms. I kinda feel like M&Ms are one of the greatest candies out there- no matter your taste preferences, desire for milk or dark chocolate, plain or filled, you can find what you want in M&Ms. You can open a bag and eat it through to the bottom, reach in and just pull out a couple, or fill your hand and leave the bowl. With children (if you’re inclined to share) there are colors to sort, crafts to make, counting which can be done.

Now here’s the part where the true me shines through. Keep in mind, you are here because you were invited, YOU are within the inner circle… you REALLY should KNOW this stuff about me: I eat M&Ms in a highly structured, ritualized manner. I adhere to strict rules and have been known to dispose of this beautiful candy when pieces or amounts do not conform. Here goes:

I eat M&Ms in even numbers. I cannot eat 1 or 3 or 7 M&Ms. If you are my friend and offer to share M&Ms with me, prepare yourself to provide an even number. If I am eating M&Ms and there is an odd number, I will offer any remainder to you- and perhaps some other even grouping along with it so as not to appear TOO ODD… If you choose NOT to accept my offer, I will promptly throw the lone offender into the trash or onto the ground where it may later attract one of our numerous younglings or some other vermin. I guess what I am saying is: say ‘no’ at your own risk!

When eating M&Ms, I prefer to pop them into my mouth 2×2, making sure not to ingest 2 of the same color at the same time. I have no rules about color combinations- red may be eaten with brown, yellow with blue, but sometimes I will organize so that I don’t eat the next one of the same color prior to eating one of all available colors in my hand- unless, of course, that would leave me with 2 of the same color in the end… Broken M&Ms are not eaten- nor “smidges” – the tiny misshapen drops of candy coating that are sometimes within. You may be surprised to know that a bag of M&Ms typically has an even number of candies within it.

At any rate, with all the things that are beyond my control in my day-to-day life, my M&M ritual brings sanity and predictability and control back to my side of the table. You all may think I am warped, that I have sucked the fun out of a one-time enjoyable candy for you. I challenge you to check out the way YOU eat M&Ms- odds are, it’s more predictable than you think…

What are your food rituals?

LTR- with Rib Graft Poem Foolery

When your subglottis is narrowed

and various trachea parts are bowed,

a reconstruction’s what you need

an ENT can do the deed.

He first will harvest one mid-rib

And cartilage he’ll have for gib

He’ll graft the narrows, do his best

and then you’ll need some mighty rest.

A day sedated, maybe two,

Until the nurse awakens you.

The stent he placed will take a ride

and in your trachea reside-

for a week or weeks, it will depend,

you’ll hunker down until the end.

Bronchoscopy for its removal

Repeat in a week to assess the upheaval.

The goal is air will better flow

just as it is supposed to go…

Perhaps dilation will be next

until you pass his airway test.

Then with healing finally comes

your voice escaping cross your gums!

Celebration, joy, elation!

Worthy all that consternation.

LTR with rib graft cures

some SGS in trach of yours!

Protected: Today it is here again

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Trach Parents' Prayer

Now I lay me down to rest

2 weeks of laundry as my nest

If I don’t sleep before I wake

I pray for nursing and a break

If I should sleep before new day

I pray this back pain goes away.

 

Please guide my heart and make it true

Watch over all my children do

Please clear their trachs and hold them so

No obstruction from below

Watch over them as they lay sleep

Safe and healthy please do keep.

 

Gretchen Kirby, 11-06-2010

 

Thankful 2010

As we cruise through the first week of November and the challenges and concerns about health for the trifecta and the round-out of the fantastic foursome… I want to take a moment to celebrate the things for which I am MOST thankful.

I have 4 beautiful kids who, regardless of their medical needs and challenges, I love for the sunshine and joy they bring to me. My eldest has struggled with being too young to manage the stress of a first year of college at this time in his life. Thankfully he had the strength to talk about it and eventually withdraw before increasing debt without passing coursework became the outcome. He is a child who lets me know that I can succeed in parenting. He frequently shows the compassionate and nurturing side he has developed over the years when he sits with his young siblings and talks with them about their interests or gives them “pony back rides” in the playroom. I achieved “random hug” status last week by completing the simple task of remembering his Lucky Charms when I went to the grocery store. These tender moments remind me that his wonderful self is still in there, surfacing and diving as he figures out how to navigate his transition to adulthood.

With the twins, I am thankful for their continued resilience, for their seeming increased ability to ward off illness. We have had multiple doctor visits in the local children’s hospital and have been able to avoid contracting the usual “inpatient” events of years past. With my daughter, she has developed a bond with her little sister that involves daily interactive play and nurturing encouragement. She is more likely to be cautious around her trach and has developed MANY pre-reading and early math strengths over the last year. My son is gaining weight (finally!) and his physical and language/communication abilities have improved significantly. He regularly tells his sisters, brother and I that he loves us, participates much more in group play and has begun to be able to mediate his environment better using language over physical means <– oops! SPED speak for less hitting & grabbing, more asking/telling!

My youngest continues to have her physical and medical challenges of unknown diagnoses but she lives her life with sunshine and much humor. Her personality has really grown SO much this year- she is regularly saying goofy/funny things and bobbing her head back and forth like the comedian she is! She has been mostly healthy this year as well and we have testing scheduled soon which will hopefully answer a few of the ongoing nagging questions.

I am thankful for my own health and strength to do all that I do- I DO wish I could do it all a little more calmly at times, but glad I still get it done. I am SO thankful for the healthy and skilled team of nurses we have had over the last year: Alicia, Bass, Diane, Meghan & Sue are resources which have kept my kids on the path of good health without an inpatient stay in 2010 thus far. (Do NOT tell the fates…) The skilled and caring team of doctors that support our efforts also cannot be over-appreciated. I have been blessed SO much by their thorough and thoughtful treatment of ongoing challenges, and quick response to emerging issues so they do not progress to major complications. Our doctors are the best!

It has been another long year but I am thankful for all the blessings that have come along! HUGS to you & yours!

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