Posts Tagged ‘family’

This has been an unbelievable week. 

My brother-in-law’s younger brother passed away on Wednesday morning.  Then, his sister died on Thursday evening.  It’s not my story to tell but it has been, as anyone might imagine (and forgive my profanity), a bitch of a week.

Toss into the mix the fact that Nik is not ony not sleeping through the night, but he’s getting more and more agitated each night that he is unable to sleep.  The poor kiddo wants to sleep in the worst way.  Last night, as he fought to go back to sleep for nearly four hours, he alternated between lying in his crib, sobbing and punching himself in the head, and sitting up —also sobbing— and banging his head against the crib.  He would calm himself down and lay down to go to sleep only to be sobbing twenty minutes later.  It’s been heart-wrenching —and beyond exhausting.

Those of you who’ve followed our story for some time already know that we use melatonin, we’ve tried a variety of medications, relaxation techniques, etcetera. Nothing works.  The bigger he gets the worse it gets.  Now, the patterns of disrupted sleep even show up on his EEG’s.  Sleep Maintenance Insomnia is the official diagnosis.  I kid you not; there is such a medical diagnosis and it’s actually fairly well-studied, documented and classified.  And it’s not a good thing for an already undersized, developmentally delayed child with growth issues. 

The human body does most of its growth and repair during sleep; children Nik’s age should be getting an average of ten hours uninterrupted sleep per night.  On a good night, Nik will get about three and a half hours in before he wakes.  Some nights he’s only awake for a short while —twenty to forty minutes.  Others, like the last three nights in a row, he is awake for just as long as he has been asleep.

Tonight, we began a trial of clonidine at bedtime.  We’ve been reluctant to use it because of Nik’s history of rebounds and adverse or paradoxical responses to nearly all medications which alter the balance of his central nervous system.  Desperate times call for desperate measures.  I am worried that we’ll see a lot of grogginess tomorrow —and probably some significant behavioral challenges.  But, you know, I think I can handle those if I’ve actually gotten a good night’s sleep.

Fingers and toes are crossed!

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Valentine’s Day.  A time for romance, for hearts and flowers, extravagant gestures of undying love and devotion.  A time to really show your loved ones how much they mean to you.  This year, I say skip the candy and jewelry, the flowers and dinners.  Instead, do something lasting and truly meaningful…create your living will as part of your advance directives for medical care. 

Yes, I did just suggest you sit down and write down your wishes should you become incapacitated to the point that you are unable to make your wishes known while in the hospital in the middle of a life-altering, potentially life-threatening crisis.  If you want to show your loved ones how much they matter to you, do something now to prevent them from ever having to fight the medical establishment to honor your wishes.

What prompted this unorthodox —and unromantic—declaration from me today?  My sister and her in-laws are, this very minute, in a meeting with hospital officials to discuss the possible fate of their youngest family member.  He’s forty, perhaps not the picture of perfect fitness and health and, certainly, a man living with personal demons.  Who among us isn’t, really?  This man is also a beloved brother, son, uncle, friend to many.  He is sweet and gentle-natured and has been known to give away his money, his possessions, his time to those in need.  He has a reputation for putting others before him.

Friday morning, this man was found unconscious in his home and was rushed to the hospital.  No one knows exactly what happened except that he is now in a coma fighting for his life.  He suffered massive internal bleeding, is on the verge of multiple organ failure, and has questionable brain function beyond pure brain stem activity (which allows one to breathe).  If he survives, he may never be the man his family and friends knew.

Because he did not have a living will or advance directives indicating his wishes for care, the hospital must do absolutely everything in their power to try to keep this person alive —significant amounts of blood and plasma, tests and procedures, mechanical ventilation, mechanical feeding, medications, intensive care facilities, respiratory therapists…and on and on.  The hospital’s efforts are contrary to the family’s wishes; the grief and shock the family is experiencing is beyond awful as they must watch and wait.  Hoping and praying that his damaged body will let go on its own.

Let me be clear; the doctors all agree that this man’s life will never be the same.  He will be alive but may be in a permanent state of complete disability and utter dependence on artificial  supports for nearly all bodily functions.  However, the law stipulates (and the lawyers admonish heartily) that the hospital must do all it can to preserve the life of this man.  Had there been an advance directive,  the situation would be very different.

This situation strikes too close for comfort, I know.  People don’t like to think about their mortality.  Certainly, no one likes to think about the possibility that they could suffer a sudden accident or illness which would leave them unable to communicate their wishes.  Take the time now, while you are healthy and able, to discuss your wishes with loved ones and to commit them to an actual legal document.  It’s simple to do, though certainly not easy to think about.  Niksdad and I had a lengthy discussion about this last night; it left us both raw and gave us much to think about.  There are so many shades of gray and unanswerable questions; I think that is why most people avoid the topic entirely. 


You will save a world of heartache for those you love and who love you.


Advance directives are comprised of three elements: the living will, a medical power of attorney, and a Do Not Resuscitate order (DNR).  Some states honor living wills without the need for a medical power of attorney (California does not).

The Mayo Clinic web site has a good overview of the topic here.  Find out more about advance directives and the laws in your state.  The National Hospice and Palliative Care Organization has free forms on its web site.

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…especially not for me this last week.  Nik has still been a bit under the weather; we finally got out of the house over the weekend. Whew.  For some reason, though, my timing with everything has been a bit wonky this week.

For example, last night I had the best of intentions of making homemade pasta sauce; it’s been a while and it felt like a fairly simple thing to do to set a pot going on the stove while I got Nik’s dinner ready.  To make a long story short, the time got away from me and the next thing I knew I had nothing for dinner! ACK!

Enter leftovers, stage left!  I had just enough of the homemade sweet and sour pork I’d made several days ago to substitute. Whew!  Dinner turned out just fine thanks to my husband’s amazing ability to reheat leftovers and make some rice while I fed our hungry bear boy. 

 The recipe is over at the new group food blog, (Never) Too Many Cooks. Go take a peek!  In fact, if you have any recipes you’d like to share, we’d love to have you as a guest blogger.  There’s information in the sidebar of NTMC on how you can showcase your culinary prowess… or just your favorite recipe. *wink*

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When a newborn baby comes home from the hospital, one bit of sage advice that is always given and seldom followed is this:

“Sleep when the baby sleeps.”

I’ve fought it for years, I confess.  No more. 

The ongoing sleep deprivation campaign seems to be ramping up a notch or two this week.  Nik’s begun waking more and having more distinct cycles of pain and wakefulness. In fact, if I am able to stay calm and focused on his body’s subtle cues, I can actually tell when a wave of pain is about to begin.

So, I’ve been going to bed earlier —working my way down toward my goal time of 8:00 p.m.  I’m not naive enough to think I might actually catch up on sleep.  No, this is merely an effort to stem the tide of utter exhaustion which threatens to become an actual danger.  Lately, I find myself driving to or from an appointment with Nik and not really remembering how we got there.  This doesn’t happen a lot —only once or twice so far —but even once is too many for my peace of mind.

The allergy testing has not provided any insights; Nik’s intestinal biopsy and blood tests don’t show any clear signs of allergies.  Skin scratch tests with actual foods (instead of the serum distillations) proved fruitless (sorry, couldn’t resist!). 

This morning, we will find out if there’s any skin reaction to prolonged contact exposure.  Yes, poor Nik has been a trooper to put up with the large grid of food smears that has been taped to his back since Wednesday morning.  That particular insult came on the heels of the scratch-test injury.  I’ve had to duct tape him into his clothing to keep him from reaching around to pull at the patch on his back.

We managed to make it through the maze of condescensionof screening nurses who demanded a dozen different explanations of why Nik needed to be seen by the demi gods they serve and actually have an appointment with one of the senior endocrinologists on staff at the pediatric hospital we frequent.  In all fairness to the doctor,  the screening nurses do not work in his department and  I have heard nothing but marvelous things about him; paramount of all I’ve read and heard is that “he has a great bedside manner and he takes as much time as each patient needs.”  I hope to be able to report a positive encounter next week.

More importantly, I hope the endocrinology line of inquiry yields some answers to help our family.  If the doctor turns out to be a complete and utter schmuck but can help us —I could live with that.

I’ve spent the past couple of days finally diving into the mountains of paperwork that are necessary to re-authorize nik’s Medicaid each year.  It is tedious, time consuming and, I confess, more than a tad depressing.  Why is it that we put up with a system which requires painting one’s child in such a depressing light just to qualify for services?

Really.  My child’s diagnoses alone should qualify him for continued coverage under the same system which has covered him since birth.  Is it really necessary to enumerate each and every little facet of the impact they have on his daily functioning?  There is no dignity accorded to the disabled by our social services system.

This week has been a busy one for Niksdad, too; his school schedule has been crazy —including one full day of classes which rolled right into nighttime clinicals which kept him out of the house from seven in the morning until after eleven at night.  We’re both tired and hanging on.

Only six more weeks until graduation. Whew.

Meanwhile, Nik continues to be a superstar.  I’m not sure he knows any other way to be, really.   Honestly, I don’t know how he can function onas little sleep as he gets and yet —he thrives.  He’s eating more varied foods and larger quantities —though not really chewing still.  He’s vocalizing more sounds and testing the waters with attempts to say a couple of words like cracker or more with greater consistency.   He’s trying to string together multiple word requests with greater confidence and less prompting on many occasions.

Nik is organizing his world into patterns and pairs and collections.  He’s even beginning to take note of other children inour weekly play groups.  This week, with a lot of guidance, he actually cooperated with another child to complete a puzzle.  He’s obsessed with letters and numbers and looks for patterns everywhere.  He is becoming a greater participant in his environment where he once was, at best, a nonchalant bystander —not even an observer, really.

When we’re not eating meals together or on the road for Nik’s numerous appointments, Nik will climb onto my lap with his Diego Rescue Pack in hand and a huge grin on his face.  That’s his way of asking me to play bouncy, silly games with him.  He asks with such unabashed charm  that I cannot resist, no matter how exhausted I may be.

Similarly, Nik brings me his “broken” toys —the ones with the slurred, incoherent voices desperately in need of new batteries, the toys with the hidden switches still in the off position —and signs help as he looks imploringly at me.  His utter confidence that Mama can fix anything is both delightful and daunting.

If only I could fix it all so easily. *sigh*

The roller coaster ride continues.  Keep your hands and feet inside, folks.

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I’m avoiding writing about allergy results and nighttime wrestling matches and eating and… all of it.  I just want to bury my head in the sand for a while and pretend that everything is rosy and beautiful and serene.

But I can’t.  It isn’t.  Sure, there are moments of breathtaking brilliance and dazzling progress— even a spot or two of calm.  But there are chunks of days —large portions of the week—I feel like I’m living in a two-part episode of HOUSE. 

Except,  the second episode —the one where House and his fabulous but troubled team figure things out in the eleventh hour and the patient has a miraculous recovery —either hasn’t been written or produced.  Or maybe it’s the season finale —the nail-biter, the cliff-hanger.  What we’re left with is the unrelenting symptoms, the questions with no answers or the answers which beget more questions in different directions. 

Unfortunately, television shows seldom, if ever, show the unremitting reality of the lives of the patients’ families.  The daily tasks that have to be pushed aside ad nauseum, the trips to the gym that are sacrificed, the laundry and house cleaning which piles up, or the sleep which is forever lost.

They damn sure don’t show the cracks and strains on the relationships.  The angry words uttered out of sheer exhaustion and frustration over a situation you neither asked for nor can control.  The fear-driven anxiety which creates an atmosphere of such intensity that even sleep —when it comes— is no longer refreshing.  The utter despair— born of watching your innocent child suffer— that makes each partner feel lonely and isolated and creates doubt in a once solid foundation.

The foundation is still solid because we eliminated quitting on each otheras an option all those years ago.  No, truly, we consciously and deliberately did.  Some days it is the only thing that carries us through.  That and our vow to never go to bed angry or leave the house without a kiss and “I love you.”  To accomplish those things takes a shitload of time and energy and willingness to suck it up and compromise when all you want to do is rant and wail.  But it’s exactly that commitment which allows us to find our center again in the quiet moments.  Thank God for that.

But today? Today hasn’t been pretty. Triggered by unholy frustration and anxiety over Nik’s ever increasing pains, tensions have been running high.  Last night was, unquestionably, the absolute worst it’s ever been for Nik and it trickled over to the morning.   The bright light of day reveals more bruises on Nik’s sweet face and a few more to the collective spirit of his mama and daddy.

The good news?  There are no apparent food allergies.  The bad news?  There are no apparent food allergies.

The good news? Nik’s ileus seems to be resolved and his gastric issues settling down. The bad news?  Same.

The good news?  Nik’s eating like a champion lately!  The bad news?  The more he eats, the worse the episodes of face-pummeling, head-slamming pain seem to become —both in frequency and intensity.  Apparently not gastric in nature and apparently not allergy-driven either.  Yet, it seems that there is some obscure connection that no one can suss out just yet. 

It just feels like the more we get information the farther we are from answers.  And the more we may simply have to accept that there might not be a knowableanswer.  That latter bit doesn’t sit well with either Niksdad or me so we soldier on —each on our own front and sometimes together, always trying our best to maintain some semblance of normal. *sigh*

Now we have more avenues to explore and options to consider.  Metabolic? Mechanical?  Neurological?

Neurological avenues include medications to prevent migraines.  Those medications have significant side effects and potential long-term effects on the tremendous gains Nik has made.  We want to keep that as a last resort but it feels like it is closing in on us faster and faster.  We don’t know how much longer we can let Nik go on like this while we search for answers.

Metabolic causes?  Possibly.  If the episodes are driven by food “intolerance” then it becomes an issue of whether or not he has an enzyme issue which may contribute.  There are definitely signs of autonomic nervous system “overdrive” when these episodes happen.  Could there be some hormonal or other imbalance?  Who knows?  I think it’s definitely time to schedule an appointment with an endocrinologist.

Mechanical issues?  Signs of sinus and congestion issues that don’t seem to be virus, bacterial, or allergy-driven lead us to wonder if Nik may be somehow refluxing micro particles of food or if there’s something aberrant in his swallowing mechanics.  Previous swallow studies looked okay but they were all done long before Nik developed any real intentional, focused tongue movement.  I’ve already talked about this with Nik’s wonderful speech therapist, Miss M, and she is looking into scheduling a swallow study.

Meanwhile, spring is in the air and it carries a whisper of hope on the breeze.  I’ve got my blinders on and my butterfly net at the ready.

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