Tuesday, September 16, 2014

Aislinn's Treasures-Night Shift

It is in the middle of the night on any given day of the week.  The rest of the family is deeply asleep while I sit in my Great Room listening to the humming of the oxygen machine assisting in my daughter's breathing. It compresses air and gently releases it as if to give her a kiss.  A kiss of life I suppose or an angel's breathe. It is the newest addition to aid in her sleep. 



It’s been years since I have had a full night’s rest for various reasons.  There are the fun and heartwarming reasons for my lack of sleep.  You know, that first year where one is dragging butt because the baby is hungry or cooing in the night.  Or up all night because the baby has the sniffles and only wants Mama.  But then there are more ominous reasons for not getting the rest I need, like, frequent hospital stays, nightly medications, recovery from multiple surgeries, wacky feeding schedules because of the efficacy of any given medication (a.k.a. her feeds), seizure precautions, muscle spasms, and a GRIN1 gene mutation that the causes constant excitability. 



Some might say I am a stubborn control freak or a helicopter mom or Super Mommy.  I have great hearing, a video monitor to track irregular breathing, and body movements.   This has proven to be beneficial in capturing grand mal seizures, choking spells, breakthrough pains, severe muscle spasms, and low oxygen.  Hmm, Super Mom has a good ring to it, but truth be told, these are skills and tools that are naturally enhanced when protecting our young.  Clearly as a Super Mom, I’d need to help the human race and not just my daughter.    So, the label of stubborn control freak is much more appropriate. 

 Seizure video...careful if you blink, you'll miss it.


Muscle spasm...painful right!?!


I recently read an article about sleep deprivation and had certain events in my life that were eye opening.   Below are the condensed the 10 items mentioned in the article.   
10 Things to Hate About Sleep Loss (1)
You know lack of sleep can make you grumpy and foggy. You may not know what it can do to your sex life, memory, health, looks, and even ability to lose weight. Here are 10 surprising -- and serious -- effects of sleep loss.
1. Sleepiness Causes Accidents
Sleep deprivation was a factor in some of the biggest disasters in recent history: the 1979 nuclear accident at Three Mile Island, the massive Exxon Valdez oil spill, the 1986 nuclear meltdown at Chernobyl, and others.
2. Sleep Loss Dumbs You Down
Sleep plays a critical role in thinking and learning. Lack of sleep hurts these cognitive processes in many ways.
3. Sleep Deprivation Can Lead to Serious Health Problems
Sleep disorders and chronic sleep loss can put you at risk for:
·         Heart disease
·         Heart attack
·         Heart failure
·         Irregular heartbeat
·         High blood pressure
·         Stroke
·         Diabetes
4. Lack of Sleep Kills Sex Drive
Sleep specialists say that sleep-deprived men and women report lower libidos and less interest in sex.
5. Sleepiness Is Depressing
Over time, lack of sleep and sleep disorders can contribute to the symptoms of depression.
6. Lack of Sleep Ages Your Skin
Most people have experienced sallow skin and puffy eyes after a few nights of missed sleep. But it turns out that chronic sleep loss can lead to lackluster skin, fine lines, and dark circles under the eyes.  
7. Sleepiness Makes You Forgetful
Trying to keep your memory sharp? Try getting plenty of sleep.
8. Losing Sleep Can Make You Gain Weight
When it comes to body weight, it may be that if you snooze, you lose. Lack of sleep seems to be related to an increase in hunger and appetite, and possibly to obesity.
9. Lack of Sleep May Increase Risk of Death
In the “Whitehall II Study,” British researchers looked at how sleep patterns affected the mortality of more than 10,000 British civil servants over two decades. The results, published in 2007, showed that those who had cut their sleep from seven to five hours or less a night nearly doubled their risk of death from all causes. In particular, lack of sleep doubled the risk of death from cardiovascular disease.
10. Sleep Loss Impairs Judgment, Especially About Sleep
Lack of sleep can affect our interpretation of events. This hurts our ability to make sound judgments because we may not assess situations accurately and act on them wisely.  Sleep-deprived people seem to be especially prone to poor judgment when it comes to assessing what lack of sleep is doing to them.

WOW, I have experienced 8 out of 10 items.  Admittedly, I’ve nearly wrecked my car.   I have bags under my eyes and hands look older.  Oh please, not now honey!  Oops, what did you same your name was?  My weight is not healthy.  Cake for breakfast, why sure!  If I pull in my immediate family, it encompasses all 10.  Undoubtedly, I need to change and this is not the perfect score I am likely to brag about.  Fortunately I have the resources to improve if I can find the strength to let go of some control, not view it as a failure, and realize I cannot do it all.   

Sleeping soundly video...pure peace.
 

Mercifully Aislinn qualifies for 24/7 care.  It has helped me to talk to other mommies and daddies of special needs kids. I have the support Aislinn’s specialists.  I have a daytime private duty nurse that is passionate about giving Aislinn the best care.  My powerful village strikes again.  Awareness is key…check!  Action plan is in place…check!  Implementing the plan begins with interviewing for the Night Shift…check!  Carrying out the plan…pending!    

Much love,
Michelle D.  Voss-Shelley
(Mom to seven year old Aislinn with a GRIN1 mutation)
    

It was titled 10 Things to Hate About Sleep Loss by Camille Peri as reviewed by James Beckerman, MD, FACC.  You can read the whole article at http://www.webmd.com/sleep-disorders/excessive-sleepiness-10/10-results-sleep-loss

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