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Showing posts from 2015

The Medically Complex Child and the ER

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In a recent trip to the ER for what I KNEW was an unusual infection I experienced--yet again--SOP. Standard Operating Procedure.  I don't make ER runs for nothing.  After four years I know when Rhyse is experiencing symptoms beyond typical .  I recognize the changes in his behavior, skin color, urine output, formula tolerance, energy level, breathing pattern and oddly enough the smell of his vomit.  There's "just a virus" and then there is "an infection has taken over and he needs medical help now!" After check in and vitals we were escorted to a room at the end of the hallway, in fact the room at the furthest end of the ward.  The isolation room. Upon discharge from the NICU four years earlier, as a matter of procedure, Rhyse's arm was swabbed for MRSA.  To no surprise he tested positive. No wounds. Just a smattering of MRSA inconsequential to his health at that time, or any time really.  But the rule books say, "once diagnosed always diagnos

Don't Lose Yourself

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"13) Don’t lose yourself.   Don’t let being the  parent of a special needs child  create or reshape your identity. We are many things, being the parent to a child with special needs is part of our identity. But it shouldn’t be all of our identity. When you focus all of your life, all of your contacts, all of yourself around your child and their needs, who you are can get lost. Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself." I have yet to figure out what the true definition of a "special needs" child is, exactly.  But in lieu of a well-fitted definition I think number 13 from 20 Things every Parent with Special Needs Kids Needs to Know may be the closest!   I know that in the first two years of my son's life my identity was lost--totally.  And after four years i'm only recently in the process of re-finding and re-defining my identity.  It's not easy. It is more of an uphill battle than I would wish!  

Among the Chaos

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As I sat in a chair watching Rhyse play in the Family Library at Children's DeVos Hospital I couldn't help but stare at the mayhem the Thomas the Train track set had become since our last visit a few days prior.  It is our custom to arrive at the hospital a half hour early to make a mad dash to the Meheny Terrace Bistro for a cup of decaf coffee with vanilla syrup and cream, and then to the Family Library for play time. At our last visit, only a few days earlier, the table was all set up and a boy the same age as Rhyse was already racing Percy around the tracks.  As the two boys jockeyed for position around the various structures they quickly figured out a sharing system that allowed them both to play with the same train. Of course most of the trains had long since disappeared, leaving only Mr. Percy. So on this day, with a scattered, broken up mess, Rhyse had no idea what to do with it. He walked around and around the table eagerly trying to find two connected pieces to pu

To be Vulnerable is to be Real

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  We long to be real, to know others for who they are, not how they want to be perceived.  And yet we are taught to be STRONG, to barrel through life as if we are modern day superheroes--impervious to the battery of storms that come our way.  How many times have I read, "you're a strong mama, you can do it" on Facebook to those who are expressing horrific emotional pain or loss.  Really? Don't be vulnerable?  Don't feel?  So be a superhero?  And if you're not, then what? Vulnerability does stink, but it's also a breath of fresh air, a kind of humanness we long to experience. I'm not saying don't be encouraging, i'm just saying there certainly seem to be times when being told, "you're strong" is far from reality, and we need to know that it's OK. Sometimes I get tired of those crazy memes(where in the world did that word come from anyway?) on FB, but then I read this one yesterday, "Sometimes I get tired of being stron

Bread and Peanut Butter

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It has been nearly a month since my son has wanted a bite of bread and peanut butter. He's been sick with infections of different sorts, on and off three different antibiotics and back on 100% GJ feeds.  I get so excited when he's 100% oral Peptamen Jr. and so discouraged when that number dwindles to zero.  After four years you would think this "normal" would just be--well--normal! But it's not. Sometimes I still can't wrap my  mind around this Noonan Syndrome thing.  I don't question where the syndrome came from because there are no answers. It just "is."  But where is it going? What will the future look like? Will he ever learn to live on table food? Will his little body ever learn to tolerate table food, save two bites a day?  How can food be the enemy?  How can I eat too much and he eat too little?  I am laughing at myself right now.  I feel guilty with a scoop of ice cream and yet I am exhilarated when my son eats one bite! Oh, the crazi

The Smell of Thanksgiving

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Tis the night before turkey day ,and all my little eaters and non eater are packed quietly away in their beds, dreaming of white turkey and pumpkin pie with mile high reddi whip on top. Some family members can't make it, others haven't made it in years, so the mix will be fun and refreshing. But here's the jib: whilst the folks frolic along the lines of food and drink, slump down in chairs to stare at a family member, or the boob tube--which ever is more attractive, i'll be counting  oral intake calories for Rhyse. Dividing those calories by the time of day and the amounts he needs to sustain his energy, and subtracting the volume of vomit along the way. I'll be chasing him with his MOOG feeding pack, and inconveniencing him as he tries to wrestle around with his oh-so-awesome uncle Josh, whom he speaks of nearly every day of his life. And finally watching for signs of severe fatigue, and finding ways to allow him quiet time to recharge until it's time to go

The Fever that Changed the Journey Part Eight: The Answer

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The Answer After a couple of hours we were called into the parent meeting room to meet with Dr. D, the surgeon who had just finished the biopsy.  He handed us a picture of the procedure, and explained that although he didn’t have any immediate answers, neither did he find what he expected.  We were left puzzled by that comment. I stared at the photo page he handed me, trying to figure out if this was a good ‘unexpected’ or a bad ‘unexpected.’ As soon as Rhyse was awake and stable we were escorted back to our room on the tenth floor.  While I concentrated on comforting Rhyse who was in great pain from the three incisions, and add on circumcision we requested, nurses, doctors and surgeons flowed in and out of the room to do their evaluations and vitals.  Apparently while being under the anesthesia some fluid pooled in his lungs and made it difficult for him to breathe. His chest and tummy were thrusting up and down, trying to get enough oxygen to function.  The nurses wer

The Fever that Changed the Journey Part Seven: Back for Biopsy

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Back for Biopsy Late Monday morning my in-laws had arrived from Indiana to stay with our daughters while we were once again contained in the hospital with Rhyse.  Thank God for family. Checking back into the hospital is no easy task when you had just checked out three days prior.  Rhyse was frantic and unwilling to be taken out of his stroller, screaming and shaking from fear.  The minute we arrived on the tenth floor he was ready to fight tooth and nail to get back on the elevators.  He pointed at the doors with all he was worth, and it was a wretched feeling pulling him in the opposite direction. By the time we arrived on the tenth floor the entire staff had heard about Rhyse’s bout with the IVs a few days prior, and everyone was nervous about repeating the incident. I did, however, take great comfort in being on the tenth floor—my ‘second home’ since Rhyse’s birth.  If there’s anywhere in the 12 story building I feel most comfortable and encouraged and loved, it’s on the h

The Fever that Changed the Journey Part Six: Weekend Home

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Weekend Home Saturday morning was an odd time.  I had two different documents to read and sign regarding cancer research, and donating the biopsy so others could use it to ‘gain more understanding’ of Neuroblastoma.  Cancer: I could hardly wrap my brain around those words.  Rhyse’s doctors were assuming he had cancer and someone already wanted a piece for research. I wanted to keep things as light as possible for the whole family’s’ sake.  Walking around in a trance wouldn’t help anyone, especially not us parents who knew the gravity of the situation.  So with this in mind I decided we would have an hour in the morning where each parent would take a child and do something; an impromptu date. I took my six year old daughter, Maggey, out for breakfast and then just drove.  She kept asking me where we were going, and I really didn’t know.  I just picked a direction.  As we were cruising along a familiar route I spotted an estate sale sign.  Being of the frugal sort myself,

The Fever that Changed the Journey Part Five: Cancer Certainty

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Cancer, 99% Certainty In a very kind, compassionate voice she relayed the news.  The CT scan had revealed a large, long tumor along his spine and sympathetic nervous system: “homogenous but abnormal posterior mediastinal soft tissue density.” We were to be admitted to the 7 th   floor for the night and begin the day with an MRI, more blood tests, and a urine catch.  “Don’t worry until you have to” were her words.  Yea, ok.  She slipped out the door and tears slipped out of my eyes…I was too tired to think clearly, or keep my wits about me.  It was 1130pm and my emotions were already worn to the bone.  I was alone and tired and I had no resistance to fear. When the doctor walked out of the room I melted.  I was suddenly thrust back to the day Rhyse was born, October 17 th , 2011 when an attending doctor told me Rhyse was “probably terminal.”  I never allowed myself to go back there emotionally, nor did I entertain the idea that I would once again be looking at the word, “

The Fever that Changed the Journey Part Four: The Dreaded CT

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The Dreaded CT Next on the list was a CT-scan.  What an ordeal that is.  The nurse came in the room with two, monster size cups of water laced with dye to slowly administer via Rhyse’s gtube.  I sucked the fluid up into one of my 60 ml syringes and ml by ml pushed each cup of water into his stomach, over the course of two hours.  At 7pm he was finally eligible for the scan, but no one came to get us.  After nearly an hour we were still waiting. If I had the energy I would have tracked down a nurse and inquired.   But I was too tired, and didn’t want to leave Rhyse alone on a gurney with side rails so large his entire body could roll through! Finally a nurse came in saying he over-heard someone on the phone discussing Rhyse’s CT.  Apparently the problem was IV number 8, the scalp IV. Up to this point no one had experience administering the CT-scan dye into a scalp vein: they didn’t know if there would a negative reaction or not. I didn’t even know there   was   going to be more

The Fever that Changed the Journey Part Three: Calling Nurse Number Four

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Calling Nurse Number Four Throughout Rhyse’s 20 months of life he has had numerous platelet transfusions, more blood draws than I can count, three bone marrow aspirations, a gtube placement, several sedated EKGs, and of course a sprinkle of unscheduled ER visits and nineteen days in the NICU. IVs are a ‘normal’ part of his life. But Rhyse’s body isn’t so obliging. Between Rhyse’s small stature, petite bone structure, hypersensitivity to pain, and veins as curly and winding as his gorgeous, red hair IVs are a terrifying experience.  What’s more, finding a nurse who can stick a vein and get a successful flush in less than three attempts is next to impossible. On this day Rhyse endured the worst experience with IVs to date.  Already screaming from the effects of a high fever, complete with shivers and tremors, nurse number one scanned his limbs over and over,  careful to choose the best site; his left arm.  Historically Rhyse’s left arm has indeed been the best donor. But afte