Monday, April 29, 2013

The New Face of Advocacy

I am an advocate.

I know, I know... I've only been doing this for a little over two years, a fact that gets pointed out to me a surprising amount, actually.  However, the thing with civil rights is this:  it doesn't matter how long or how hard you've been advocating, but that you've been doing it.  Period. There is always a person or organization that feels that one group is less than another;  that is certainly the case when you look at Down syndrome.

When I was a kid in the '70s (back even before "Awareness" was de rigueur), if you were raising funds, you went door to door.  You talked, face to face to the people in your community, you handed over petitions for your neighbours to sign.  We had to do that once, not for DS (as those children were hidden away then), but for safety. The house I grew up in is located at the top of a hill on a sharp 90 degree turn.  Drivers would gun the motor at the bottom and would be going full tilt by the time they reached the crest and then they'd hit the turn.  Not surprisingly, as this was in the days before MADD, many people--especially in the winter--would not account for the turn and end up on our front lawn.  During one afternoon storm, my brother and I amused ourselves by counting the cars as they came crashing over the curb.  There were 19.  Every spring our front lawn was a disaster.  We would collect the hubcaps and line them up for their owners to retrieve them.  What we should have done is nailed them to the fence as a warning, but hindsight is what it is.

My parents took up a neighborhood petition and took the problem in front of the city (then "town") council and got a stop sign put up halfway up the hill.  That slowed the drivers down for the most part and we could stop fearing the day that we'd end up with a Buick in our living room.  Today it seems very simple, it is an issue of child safety.  Then, well, it was a big deal then.  No one cared about the two kids living in our house (or the two adults either).  Or the other children that came over to play.  In fact, there was some push back, as there always is in matters of bureaucracy;  I can't quite remember what it was exactly, but one of the Town Councillors felt that traffic control was pointless and the funds for one stop sign would be better spent in Bramalea (a then-growing part of Brampton that he represented).  Various arguments were presented, I think just for the sake of creating discussion and justifying salaries.  One Regional Councillor argued that it would cost the taxpayers too much in gas to stop and start again.  Driver education was also mentioned at various points.  But, we stood our ground.  Sure, people looked at us a little weird and grumbled as they stopped at the new stop sign.   But, we did it and it happened.  No cars ended up in our living room, our lawn remained green and my brother and I managed to grow up and make it to adulthood.

Petitions, leaflets, posters, marches, protests, picketers.  Those was the vehicles of advocacy that I knew growing up.  All very structured and organized and a lot of legwork.  Growing up in a trade union family meant I was exposed to that at a tender age as well.  I'm also old enough to remember the last dying days of the Vietnam War on the news.  I was in university during the Gulf War (Iraq the first) and there were protests everywhere.   There were bomb threats called in to the university daily.  This was also in the early days of GLAAD, of the inclusion movement.  Macedonian students clashed with Greek students.  It wasn't a pretty time then either.

So, it's not that surprising, that me, a union nurse who has now moved to another area of suburbia (not Bramalea) in this now cosmopolitan city, is advocating for something she believes in passionately.  My youngest son, one of my twins, has Down syndrome.  To myself and Team Logan, it's not that big of a deal.  However, it is to a lot of people.  There are still a lot of people who see my son as not quite a person.  As a freak, devoid of consciousness and meaningful thought, who looks exactly like every other one of his kind.  As someone who has no right to be here (and no rights while he is here).  As a result, he and those with Down syndrome are marginalized, not only by the general public, but by those that make our laws, those that uphold the law and those that are charged with his physical and mental welfare.  Hell, even by some in the greater Down syndrome "community".  It's not just his civil rights that I have to strive to protect, but his human rights.

Once I decided to throw my hat into the ring, I looked around at what was to be done.  There are a lot of Awareness Campaigns and awareness is a good thing.  However, I quickly grew tired of awareness, especially when you had people wearing the T-shirts or the bracelets and calling their friends [the R word], or organizations that claim to advocate, yet really don't do much of anything other than raise funds to pay for the next fundraiser.  It was very frustrating, finding myself in a sea of awareness, yet constantly having to explain my son, his medical history, what that means, what that means to us to every Tom, Dick and Harry in the Doctors office, in the grocery store and everywhere else.  I did this for the greater good, in the name of Awareness and Education.  It was bad enough being (practically) asked for my gynecological history by perfect strangers (in regards to the twins)... but throw in a little chromosomal fun (other than my olive complexion and my husband's gingerness) and all semblance of social limits are thrown right out the bloody window.  Different.  Other.  Unworthy.

I turned to the new frontier of advocacy and activism, the internet.  In this, the information age, we all have blogs and Facebook and Twitter.  Through social networking, thousands of parents like myself have come together at various nexus points to talk about our kids and what the future holds.  Thousands of self-advocates, adults with DS, are doing the same, networking and shaping the world around them.  In fact, I had never heard of twins like mine until I found a whole online group of parents of multiples with DS.  Instead of a handful of parents in a local community meeting for coffee once a month, thousands upon thousands of parents, advocates and self-advocates have the potential to meet daily.  In an instant.

It is all very exciting and terrifying at the same time. 

This brand of grassroots advocacy is something that I can do a great deal of, a little at a time.  I don't have large blocks of free time with the demands of my family and my shift work job, so I can do a little here and there, any hour of the day or night.  Which is awesome, as I get to talk to so many people in so many different time zones.  Social media has made our world smaller;  advocacy has now gone from local to global.  I can spend a few minutes when I can, to share my thoughts and experiences or bolster the spirits of another who is having a hard time.  I have been able to help edit publications for Down Syndrome Uprising on the bus in the morning.  I've advocated on break at work, setting up my laptop and writing when I can.  Instead of reading the paper in the morning (does anyone actually do that any more?),  I check the news online.  I check Twitter, I check my Facebook account, group and pages (both Down Syndrome Uprising and Down Wit Dat).  I have blogged and shared news articles while tandem breastfeeding two babies. I have fielded emails with journalists while at pre-op appointments for my son's heart surgery.  I have reached out to countless others from my son's hospital bedside, speaking out against injustice while the morphine dripped in his veins.  Even something as monumental as Wyatt's surgery has not stopped me.  This life event, this period of my life that was so stressful as a parent, is peanuts compared to the struggles of others.  The entire time, I continued to work, cognizant of the fact that not so long ago, Wyatt would not have qualified for this surgery as he had DS; he would not have warranted the medical care that another child would receive without question.  Advocacy changed that.

Anyone can do this as well.  No longer is advocacy solely in the hands of those that get paid to do it or a select few that have the "right look" or the "right feel".  We fight for acceptance of our children, stopping for nothing other than total inclusion.  We have our detractors too... we get called "Mommy Bloggers" and because we choose to use a medium that teenagers also use, because we are not paid by larger organizations or mainstream media, we are easily dismissed with one jaded wave. 

But, as those groups are figuring out, we are anything but easy to dismiss.

Social media has allowed me to connect with family and connect with friends, new and old all over the world.  I'm no longer alone.  I'm no longer the one in a million who has fraternal twins, one of which has DS.  I'm no longer one in 700 mothers.  I am amongst thousands.  Advocacy is no longer a "March on Washington" or on Capitol hill in Ottawa.  We are marching, daily, as we wait for the coffee to brew or the dryer to finish or yes, even in the stolen time in the bathroom.  We do this daily, within seconds.  The face of Down syndrome advocacy, much like the community itself, is growing, evolving. No longer are we trying to change our little corner of our community, to "fix" our children or hammer a square peg into a round hole.  We are trying to change the world.

One tweet, one post, one comment, one update, one petition, one share, one vote at a time.


This post is part of a Blog Symposium brought to you by:

Down Syndrome Uprising

Monday, April 22, 2013

A Step Backwards for Down syndrome Advocacy

I've been out of the loop for a bit.  As most of you know, recently my son had open heart surgery to repair his AVSD.  I haven't been around in the online scene as of late which has been troubling me.

What's troubled me more is a current shift in thinking, especially when it comes to the events following the death of Ethan Saylor.  I was saddened to come back from my hospital hiatus to see that not only some advocates, but even some of the major organizations are pushing towards "Down syndrome specific training" for police and first responders.

I'm not going to beat around the bush: I think this is really a misguided application of energy.  One in fact, that may undo years of hard won advances with Down syndrome advocacy.  There are a few reasons for this, some of which I'm sure haven't been considered by those who are pushing for it.

Firstly, who decides what subjects are taught or what aspects of Down syndrome will be highlighted in this training?  What does this proposed training involve?  Not too long ago, the community was rocked by a supposed "nursing" site posting an old image caricature of an infant with Down syndrome.  Many of the "conditions" presented were irrelevant, occur in the greater population at random and have no bearing on quality of life.  What will affect a person with DS life are things like heart disease, which the general population also has and in much greater numbers.  There are umpteen studies showing that positional asphyxiation is a reality.  Law enforcement and any person using restraint (including us psych folk) are well aware of this.  Every single document, every single video that I have come across in my search clearly outlines the danger of positional asphyxiation.  A person with DS is in danger of dying when restrained face down on the ground, yes.  So is everyone else.  Except in Maryland, apparently.  The reality is, these deputies knew the dangers and chose to ignore them, or quite frankly, simply didn't care.

Secondly, who is qualified to teach 'Down syndrome specific training'?  Physicians?  Lawyers?  Other law enforcement?  The National "Advocacy" Organizations?  Training also needs constant updating and re-certification.  Who designs these courses, who are the supposed experts here?   Who accredits them?  From what sources does their information come from?  If you remove the money from the equation (as people will have to be paid to come up with this course material, train the target audience, maintain the certification and audit those with the training), who really benefits from this training?  The officers, who will look at it as one more thing to endure to get their superiors off their case for one more year?  With that in mind, will these strategies really get incorporated into everyday use?

Thirdly, and most importantly is the glaringly obvious thing that people are missing:

By advocating for Down syndrome specific training, you are further marginalizing those with DS as the "other", as "different" and setting them outside the rest of society.

By stating that people with DS--a population that is as diverse as the greater population it is derived from in the first place--need "special considerations" when being talked to by a police officer, EMS, Firefighter or whoever else you want to extend such "training" to, you are predetermining.  You are profiling, you are prejudging.  People do not fit into neat little boxes.  For example, you cannot deal with every mentally ill person that you encounter identically as there is a pantheon of symptoms and an equal amount of ways that communication can break down. The differences are just as numerous and the analogy holds when you are looking at people with developmental delays.  Every single person is different;  in terms of DS, the extra chromosome can express itself in a multitude of ways.  Some will have sensory issues, most won't.  Most will have heart issues, some won't.  Making blanket statements about anyone, be they developmentally delayed, mentally ill, of a specific ethnicity, or any other difference that sets "them" apart from "us", is dangerous, marginalizing and opens the door for so much abuse. Relying on gross generalizations in times of crisis is poor preparation and serves and protects no one.

I have a great respect for all law enforcement, not just the officers that I cross paths with in my line of work.  I refuse to see police as mindless killing machines who need to be distinctly told not to do something so that all of us can stay safe. The ones in my community certainly aren't, at least not any more.  Back in the bad old days... well, I could tell you stories growing up in this region.  There is a certain level of education that is required to get in now.  There is a certain level of community involvement that is required, you have to be a very well rounded person to be considered, to represent a diverse population safely and with compassion.  That isn't something that is taught or possibly can be taught, it is recruited for.

We need real world solutions, not special training, to keep people like my son from dying at the hands of those who are sworn to serve and protect him and the rest of my family.

With that in mind, allow me to humbly offer the following:

1)  Recognize that a Sheriff is an elected official not simply the "top cop", who can quite easily become as corrupted as any other elected official.  Know your candidates and find out their track record prior to them obtaining office.  Cast your votes accordingly.

2)  Abolish "moonlighting".  The deputies who were responsible for the death of Ethan Saylor were moonlighting as mall security, a job that (if our friends in mall security will forgive me) is well below their level of training.

Let me give you an example.  As an RN, I am not allowed to work as a Personal Support Worker if I find myself strapped for cash.  There is a reason for that:  I have a certain skill set, a scope of practice and a specific license.  If I were able to take a job below that scope of practice, yet in the same field, it would blur a lot of lines.  If I was tending to an elderly client who suddenly developed symptoms that I recognized because I was an RN, I couldn't pretend it wasn't happening because "a PSW wouldn't know that".  By the same token, if I used interventions that I know from being an RN, I would not be able to legally justify/use them due to my current employment as a PSW.  The lines are too blurry, the jurisdictions too different.  I can't be one thing and pretend not to be a couple days a week to work a job with a lower skill set, if only to protect my license and my main livelihood.  You shouldn't have active paramilitary personnel working as mall security either.  When the three men were called to the scene, they were acting as mall security.  Somewhere in there, they decided they were deputies again.  Regardless, they sure became deputies again (and invoked all rights and privileges as such) once Ethan was dead.

If I need a little extra cash, I pick up overtime.  The police in my area work along the same lines.  There are also a lot of paid duty opportunities for police as well.  This is why here, you find uniformed officers at ball games, outside construction sites, doing patient watches in hospitals and at the liquor store at Christmas.  During such, they are expected to fulfill the responsibilities that their uniform dictates.  If malls and whatnot expect a certain level of security, they pay for it.  Offer the police a little respect and pay them properly to perform their duties as police officers.  They earned it. Allowing active, trained officers to take lesser skilled jobs in a related field is simply asking for trouble and opens the door for tragedy, as it did in Maryland.

3)  Recognize that compassion cannot be taught or encouraged in those that aren't receptive.  Recruit accordingly.  There are some that go into policing that are angry, have deep set prejudices and too easily cross the line.  We all know stories of this, of cops that take it too far.  Take this guy or this guy, or this guy.  But, for every horror story, I'm betting there are 10 great officers (both men and women) who actually do care about the community they serve.  You need more of them in the field, not just in front of the camera when the politicians feel it's appropriate.  It is possible to have a general sensitivity towards various cultures and groups and still be able to control a situation (and ultimately ones self).  It's been put forth by one blogger that we live an ugly world and if there was more compassion we would not need police or even soldiers as there would be no war.  I'm not talking about achieving Utopia here; sometimes force is a necessary evil.  However, I guess I'm a bit spoiled coming from Canada.  We don't have legions and legions of soldiers.  The ones we do have are respected across the globe for their compassion and known as "The World's Peacekeepers".  It is possible to be both.  The police in my community at least, certainly reflect this.

The idea of "Down syndrome specific training" is ridiculous, insulting and might very well put our advocacy efforts back decades.  You cannot train for such a diverse population, as people with Down syndrome exist in every ethnic, socioeconomic and religious background, not just white, middle class, Christian ones.   Those are the factors that dictate how a person with Down syndrome receives care, is viewed in the community, is treated in their own family and even how the person themselves view law enforcement and first responders.  It is these factors that will shape how a person with Down syndrome will react in a a given situation, not their chromosomes. The idea that my son, who will grow up respecting law enforcement--just like Ethan did--could die of  "Down syndrome" and "heart issues" at the hands of law enforcement--just like Ethan did--shakes me to the core. There are a lot of comparisons that I cannot help to make between Ethan and Wyatt; Ethan's Mom is a well known DS advocate too.  The idea that sweeping generalizations, by the medical community and by law enforcement, may very well rule my son's future life and death, makes me angry.  We cannot hope to change the public perception of people with DS to one of complete inclusion by making people with DS the "other" to the very people that are supposed to take care of them.  There is no magic list of "things that you need to know when 'dealing' with a developmentally delayed person" other than you are talking to a human being with thoughts, feelings, desires and needs.

Just like everyone else.  I cannot stress that enough it seems; that particular point cannot be lost.

Friday, April 19, 2013

Surgical Suite: Coda

Hectic days followed our return from the hospital.

We were glad to have our boy home... I was glad to be home.  There is nothing like sleeping in your own bed, a sentiment that Wyatt himself would have agreed with.  There seemed to be piles of things everywhere and a mountain of laundry to do, but we were home.  Everything else was just details.

The first night I tiptoed into the twins room on a couple of occasions, just to ease any motherly paranoia concern I might have.  At one point I paused in front of Wyatt's crib, concerned about his breathing.  It was even... yet seemed shallow.  Slow.  The panic started to rise up for just a second until I caught Zoe's breathing out of the corner of my eye.  They were the same.  Slow, even and very much asleep.  There wasn't a problem with Wyatt's breathing, in fact it was perfect.  What had startled me was the lack of secondary noises, the gasping.  With a smile I returned to bed, with the monitor cranked up a little higher. 

Over the next few days, Wyatt seemed to become more energetic before our eyes.  By Wednesday, he was sitting in his booster chair waiting for his breakfast and he babbled at me non stop for what seemed like 3 minutes.  Our "conversation" went back and forth for quite some time until I realized that I was going to need more coffee to keep up with this child.  His eyes, which often assumed a "Dude abides" half mast laid back look, were wide awake and shiny as green river stones.  He was all over the place at playtime, energetically chasing his sister down and interacting more enthusiastically with the world around him.  He didn't seem to mind the solo "not so" baths either... due to his incisions, we had to bathe him by himself in an inch of water.  He carried on as if this was a regular turn of events and made up for the lack of depth by splashing even more, grinning from ear to ear.

The week shot by and then it was Thursday, the day of his follow up appointment at Sick Kids.  He was scheduled for a chest Xray at noon, an echocardiogram at 12:30 and his follow up assessment at 1:30.   We left at 10:30 yet still managed to get snarled in traffic and barely make it for 12:00.  Wyatt and I were headed in to Xray to register, while Sean and Zoe went to find parking.  When I entered the front doors, I could feel myself tensing up.  I guess 4 days is not enough time to shake off your hospital stress.  While waiting, I managed to snap this picture of him, rocking out in the stroller.  He was ready to go.

Rock on, son, rock on.

We were called in and I had to get him undressed and strap him into the "plexiglass iron maiden".  It consisted of a wooden base with a bicycle seat which he would straddle.  While holding his arms above his head, two plexiglass halves came together in a tube around his ribs.  I held his hands and started my singsong during this, which seemed to give him something to focus on.  We only needed two views and the tech was quite nice this time (as opposed to our last xray encounter), which made a potentially unbearable situation tolerable.  During the entire process, you could hear Zoe screaming "WYATT!  WHY-ATT!!" from the waiting room and the occasional stampede of little feet down the hall past our door.  I couldn't shake the mental image of our mini-amazon in pigtails storming in, demanding Wyatt's release.  Once we were done, we snuggled afterwards and Wyatt cheered up in time to high five his new friend as we walked out the door. 

This is pretty much where our day stalled.  We were right in the middle of what would be our normal nap time and the echo people were really backed up.  What started out as 10 to 20 minutes quickly turned into an hour and 15 minutes of trying to keep twin two year olds occupied.  Upon entering the echo room, I laid Wyatt down on the stretcher, held his hands and sang to him once more while he cried large tears at the tech.  Eventually he fell asleep... which gave her more leeway to get some better pictures.  Once he was completely asleep, I extracted myself by letting him hold on to some of the lead wires and was able to straighten out and un-contort myself.  He woke up as she put the wand to his neck and he would have none of it.  We concluded the echo, I cleaned him up and tried to console him as we waited in the hot little room for the official okay to move on to the next appointment.  It was now 2:30.  We were an hour late for our clinic appointment; so much so that the NP came looking for us.  She gave a quick listen to his chest while I gave him some juice and settled him down.  A few minutes later the tech returned and we were released to go to the NP clinic.

Wyatt was undressed again, weighed and auscultated.  Since the echo was so detailed (!), there wasn't much left to do but take out his stitches and do a little health teaching.  The results were similar to those post surgery:  you could see the AVSD repair and there was some mild regurgitation of the mitral valve and up into the pulmonary veins.  He would probably have to have this valve "tuned up" in the future, but right now, things were greatly improved.  Although we were still to avoid picking him up under his arms and avoid activities that involved a lot of reaching for the next six weeks, he could return to his early childhood interventions as soon as possible.  With that, we attended to the last bit of nastiness:  taking out the two "purse" stitches that had held his drain sites closed.  That completed, he was a free man.

My parting ritual was a little rushed on the way by as we had to rescue the van from the parking lot, but the fountain received its shiny offering, hopefully for the last time. We will have to follow up with Wyatt's cardiologist at regular intervals; our next appointment is in two weeks.

The last movement has completed, the arias have been sung.  The hero has finished his journey and moved to a better state of existence, surrounded by his loving family.  I guess it says a lot to have framed his AVSD surgery in the context of a symphony or an opera, but we all cope how we can.  I use music and a sense of humour that is often so dark, I can barely see.  Not to put a too fine a point on things but since I have been home I have been finding unopened cans of Coke all over the house in various states of refrigeration.  I could lament the fact that I have taken a can out of the fridge to drink and abandoned it with one distraction or another... or I can look at it as getting my future self a drink (how thoughtful of me!).  Music is a ribbon that weaves through most of my writing, collecting thoughts as one would collect beads;  it is no accident that his surgery, this major life event, ended up being presented in such a way.

As promised, we need a fermata, a final note to to hold on high and finish this opus.  We got that, with the help of the weather.  Aside from our brief glimpse of sunshine on the day Wyatt came home, things had returned to rain and gloom.  As we left Sick Kids yesterday, a warm wind was blowing.  The sun was shining, it was 20 °C (68 °F), there were tulips poking up in the gardens and the landscapers were limbing the trees and filling the pots with spring blooms.  As we paused for a moment to allow a car to pass before the stroller, Wyatt craned his neck around to look at me.  A gust of wind tousled his curls and he smiled broadly.  His hand reached out to mine and with his eyes still shining, he put my hand to his cheek and nuzzled it a bit before facing forward again. Almost on cue, his sister shrieked "WHY-ATT!  Yay!" and with an equally shrill "WHEEEEEEE!" that seemed to hang in the air forever, she led the charge away from the hospital.

Onwards.  To new adventures.


The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

Tuesday, April 16, 2013

Surgical Suite: Finale

I woke up at 0300 again, this time to a nurse tiptoeing in to let me know that it was time for Wyatt to have more Tylenol.  He was fast asleep and comfortable, his breathing easy.  It was decided to leave him for now;  she left the dose in case he woke up and I went back to sleep.  I was awake at 0800 again to find him still comfortably asleep, despite now having missed two doses of Tylenol.  This was fabulous;  his pain was obviously controlled, he was eating and drinking, all his tubes were out and all that stood between us and home in a few hours was whether or not he could poop.

By nine we had to wake him up to do vital signs, give him his morning Lasix and get breakfast into him.  I went to wake him... he stretched catlike and opened his eyes with a smile, which rapidly turned into a frown once he saw the syringe.  We tussled briefly over meds, we hugged and went about the business of getting him sorted out for morning.  I opened the blinds at one point and instead of being greeting with the usual rain and gloom, I was almost startled by sunshine and fluffy white clouds.  It was a beautiful morning, made even more so by the promise of home. 

The NP came by, had a good listen and gave a little health teaching re: his rashes and dressings.  His drain dressing was to come off the next day and as far as she was concerned, she was going to recommend him for discharge.  I ordered his breakfast and when that arrived, started the process of getting it into him as rounds were going to be in a short while. 

It seemed silly to get him dressed again before giving him breakfast, so he ate it shirtless (and pantless, but you know our feelings on pants).  He didn't care;  he was hungry!

I can has pancakes?
You can clearly see from the photo that the incision is looking good.  Also present are the bandages over his drain sites.  To the right of the incision is one of the holes left from the pacing wires.  The redness on his neck is excoriation from the dressing over the central line.

After a pancake and some oatmeal (which, in our house, cures everything) and one of his cups full of juice, he was ready for a cleanup and to get dressed.  Before breakfast, his nurse had given us a small vial of powder to mix in his juice if he didn't have a bowel movement.  I smiled at her and told her I'd mix it up, but I'd first give him a chance as he normally went after breakfast.  She looked at me oddly and moved on.  Sure enough, a few minutes after breakfast, Sha-ZAM! I don't think I've ever been that happy to change a diaper.

I had him washed, dressed in a plaid shirt and soft cargo pants and socks (which, he immediately whipped off), myself cleaned up and the room straightened before rounds appeared.  During the initial presentation to the group by the NP I realized something.  Until she mentioned it as an afterthought, I hadn't heard the words "Down syndrome" or "Trisomy 21" in reference to Wyatt since the anesthesiologist mentioned it just before his surgery (as an aside).  It was the same in rounds, at report and at shift change.  Even in places where you would expect it to be mentioned, it wasn't.  I can't tell you how comforting that was for me.  He was just a boy in their eyes. A boy who needed his heart fixed, who had it fixed and was now avidly chewing on one of his socks.  He was not defined by this extra chromosome; his worth, his eligibility for treatment, his person-ness had nothing to do with that.  The tears threatened to well up again, as I was eternally grateful for this subtle yet important change.
  
The NP popped back in as the others moved on down the hall to let me know that she was going to work on his discharge orders.  I should tell my husband to pick us up between 12 and 1230.  As it was 1030 now, we had some time to wait, so Wyatt and I alternated between playing and watching TV.  We received our final orders, a prescription for Lasix (which he would take once a day for a week), hydrocortosone for his rashes and Tylenol for pain relief.   We waited for Sean to arrive;  he would be at least 45 minutes late due to an accident on the Gardiner Expressway, but that didn't matter as I wheeled the first load of luggage out through the unit doors into the hall and hugged the stuffing out of my family when they did arrive.  Quinn was playing it pretty cool, but Zoe's hysterical "Mama! MamamamaMAH MAH!" echoed throughout the Atrium. 

Our luggage retrieved, "Why-ATT!!!" received happily by his siblings, we made our way downstairs.  On one of our first visits there, what seems so very long ago now, I tossed a penny in the fountain with a wish.  I have kept up that tradition;  every night before I went to the hotel or on my last visit downstairs, I would stand in exactly the same spot, bring a Loonie to my lips and then let it sail into the fountain after asking whoever was listening for a little extension on our luck.  Before we left en masse, I stopped our family in the Atrium and quickly dug out a Toonie.  It touched every single one of our lips before it too landed in the water, after I thanked the powers at be for listening to this mother.  This obstacle, this issue had been overcome. That little undermining ditty had finally been silenced after all these years.  Despite the giant backpack I was wielding, I felt lighter.  Wyatt could not stop smiling and Zoe would not stop babbling about him. Our prescription collected (along with a coffee for me), we walked out into the afternoon and into the rest of our lives.



The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

Monday, April 15, 2013

Surgical Suite: Allegretto con moto*

Saturday was another gloomy, rain soaked day.  I did not make it into the ward for rounds as I had to eat, pack up and check out of the Fortress of Solitude.  I then put the lug in "luggage" as I made my way to the hospital.  I hoped that the promise of a private room (with a bed) would come to fruition;  if not, I would be making up a bedroll on the floor at Wyatt's bedside.  I have actually slept on the rough side of a rock... and every kind of stretcher, bed, day bed, pull out, couch or big chair that a hospital can offer.  I can do it, but I am not as young as I used to be and my wishes for a bed was totally with my aching bones in mind.

As I got off the elevator on the fourth floor, I was momentarily confused with what I was seeing in front of me.  As I kept walking, I realized that the doors of the unit had shut;  I assumed that there had been a drill and that the magnetic locks had closed the fire doors (as they did in my hospital).  As I wheeled my leopard print bag even closer, I realized that there was a note on the door:

"4D IS CLOSED DUE TO OUTBREAK.  PLEASE DO NOT ENTER UNLESS NECESSARY"

Outbreak?

WTF?

I pushed my way past both sets of doors, hitting the handwash station on the way.  I went straight to the desk and was greeted by an unsmiling person wearing a yellow isolation gown.  I identified myself and asked "what kind of outbreak?"

"Rotovirus", she answered, just as unsmiling.  I think I swore and made my way to my son's side.  I was very relieved to see that there was no isolation signage outside his quad room.  He sat up immediatly and looked extremely happy to see me.  We had a series of long hugs and tickles which tided us over (and settled my 'outbreak anxiety') until his nurse introduced himself.  I also had to call Sean and tell him to not bring the kids, which made me very sad and homesick.

There was a lot of activity in the halls.  Patients were being moved around and nurses were rushing about their day.  With the outbreak precautions however, you could tell that there was an added level of urgency about everything. Discharged patients had to be gotten OUT.  Patients that needed isolation had to be sequestered to one area of the unit.  Somewhere in there the Charge nurse dropped by and asked if I thought we would be comfortable going home TODAY, in lieu of the circumstances.  I conferred with Sean via phone and talked to both Wyatt's nurse and NP and we all decided that staying another night was a very good precaution, especially since his drains were still in and I knew that their removal was going to be a bit of an ordeal. 

Shortly after, we started moving ALL THE THINGS to our new room.  I busied myself with setting up before going back to help push a sleeping Wyatt and his crib to his new digs.  They had given him some morphine in anticipation of drain removal later.   He woke up with the motion of the bed and started crying again, but settled once he figured out that we were on a bit of an adventure.

He was barely in his new room when it was time to pull his drains.  This is an added skill, one which Wyatt's nurse had not achieved yet.  As a result, several people were planning to be present (and we had to ask for more to help hold him down).  I was hoping that my meeting of family downstairs for a quick coffee would coincide with this so that I could have an excuse not to be here;  sadly, everyone arrived and Wyatt looked at me with tearing, terrified eyes at all the yellow gowns and splash guards.  I couldn't leave him.

Each of the Jackson-Pratt drains (there were two) were sutured in heavily, with coils of suture around the "base" of the tubing (near the skin) for stability.  If the drains had been pulled out, they would have caused a pneumothorax, so the drains were put in as securely as possible.  I was at Wyatt's head and holding his hands as the area was first cleaned with Betadine and the coils undone.   I sang softly into his ear, something that I was told later made all the difference for everyone.  Before she began, the charge nurse asked me softly,

"Jen?  Have you ever seen or done anything like this?"

I answered her over my son's chest that I hadn't ever seen this one done and I certainly hadn't pulled any drains in a very long time.  She nodded and quickly told me what to expect.  Pulling the drain itself would hurt, but the area where it had pulled from and the path it had taken would burn for several minutes afterwards.  Wyatt was going to be in a lot of pain, which is why they had given him the morphine an hour before (so that it was well "on board").  I resumed my quiet singing, trying to keep my voice even as my eyes overflowed and betrayed my calm.  I had to change songs two or three times as the pulling began and my son's cries turned into screams.

I could see the charge nurse's eyes getting very wide as she pulled abruptly on what seemed like miles of tubing. My voice kept cracking and he looked like he had been punched in the abdomen. I turned my eyes back the Charge nurse just in time to see the end of the tube finally come out, followed immediately with a jet of sanguinous fluid that made a squiggly line up her gown and over her visor.  She quickly removed the second drain and applied pressure.  Wyatt was gasping for air in between screams, his eyes a bright green and focused on the ceiling.  A pressure bandage was applied quickly, the oxygen saturation monitor was put on his toe and I carefully scooped him into my arms. I hugged him tightly as the staff respectfully cleaned up quickly and left us.  We both cried for a moment, before I resumed my singing and calming him once more.

He settled a few moments later and was happy to veg out to some television.  After a quick trip to the bathroom to let out a few more sobs, I left Wyatt in the charge of his nurse who was kindly telling me to take a break and to take my time with it.  I went downstairs to meet up with family;  we had a very short visit, but it was well timed.  I was grateful.  I went through the cafeteria to try and find a few things that might entice him to eat, grabbed a salad for myself and headed upstairs once more.

Wyatt was asleep, so I got out the laptop and wrote for a short while.  On his awakening, he seemed to have finally found his appetite.  Maybe removing all those drains made some room, who knows?  He quickly polished off 150 ml of juice, half a banana, a fruit cup, half a boiled egg and some grated cheese.  Later he would have 275ml of juice and a yoghurt, but turned his nose up at his bedtime bottle.  It was amazing to see this transformation.  I took the monitor lead off his toe for the last time, noting that his sats were consistently between 96 and 99.  Wyatt was completely pink and looked more like his Sean and his ruddy ginger-ness every minute. 

The rest of the afternoon and evening was spent wearing his own jammies, watching TV, napping and playing with Scout, the caterpillar and the "coo coo bébé!" thing.  He talked to the other kids and Daddy on the phone, all the while petting the beard on the picture of Sean on my phone.  By 10 pm my eyes were closing but he was still partying on.  He would drift off to sleep but then unit noises would wake him up or he would stir, or it would be time for more medication and the subsequent calm down after that.  I turned the TV off at one point and he just lay there and whimpered, moving his jingle lion quietly back and forth.  It suddenly occured to me what was wrong:  there was no music.  Since they were born, they have slept to the sound of a radio, to give a little background noise and comforting sounds.  I quickly set up the laptop and we both drifted off listening to Nights with Alice Cooper.  It played until the wi-fi timed out, but by then we were both long asleep. 

There was a lot of movement this day, some of it smooth and transitional, some of it rough and laborious.  We were so much closer to going home:  off oxygen, drains and lines out, eating and drinking.  We still had to make sure that his bowels were working, that his pain was controlled and that the Lasix was working to remove the excess fluid.  With a bit of luck, tomorrow would prove to be the last part of this opus.  We were both weary and eager to rejoice in the final fermata**.

 -----
*Allegretto con moto - musical term meaning "moderately fast" (Allegretto) "with motion/movement" (con moto)
**fermata - the final note of a movement or symphony.  It is often held for dramatic effect.  


The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

Sunday, April 14, 2013

Surgical Suite: Adagio*

We had been greeted the previous day with a snowstorm;  it had cancelled buses and generally depressed the hell out of everyone.  The sidewalks had been slick with a layer of slush in Toronto, but points farther north had ice storms, wind and damage.  This morning dawned rainy instead.  I woke up early to a torrent outside my window and I drank my first cup of coffee in front of the laptop, wrapped in a blanket against some imagined chill.  

If there is one thing that I enjoy at Sick Kids it is the little loaves of banana bread that they sell in the cafeteria.  I had purchased one the day before and ate half of it with my first cup of coffee.  A quick call to the unit let me know that Wyatt had slept well and only required morphine once.  He had gone for his sedated echocardiogram and was still sleeping from the chloral hydrate.  I skipped breakfast otherwise, in an attempt to make it to the hospital in time for rounds.  As I cursed myself for forgetting my umbrella in the van, I made my way to the hospital.  I am very lucky that my hairstyle involves mainly being rubbed with a towel as I was a soggy mess by the time my shoes squeaked up to Wyatt's door.

The door was closed for rounds.  As there was another patient in the room, for confidentiality reasons I had to stay outside.  When it was Wyatt's turn, the other parent left and I went in and stood beside my son's bedside, where he was still sleeping.  I stroked his forehead through the crib bars as the NP (Nurse Practitioner), Charge Nurse, Floor Manager, Pharmacist,  Social Worker and a few other solemn looking people evaluated my son's progress.  The NP woke him up to listen to his chest and stated that he looked good on paper and in person.  It was the team's agreement then that he would have all his tubes and wires pulled (with the exception of the saline lock in his foot as he had one more dose each of ketarolac and antibiotic left to go) and that the plan was to get him up to the playroom and "let him be a boy".  I was very happy with this as that is exactly what I had hoped would happen.

The IV in his hand was taken out first.  He hated it.

Then we took out the central line, including the two stitches that held it in. He hated that more.

The pacing wires were next.  They were knotted and stitched in.  He hated the world after that one.

He was so inconsolable in fact, that he cried himself to sleep in my arms again.  After our unsuccessful holding the day before, we found that it was easier for me to lean into his crib and have him either lean into me with his arms around me or to lean on me (like a back rest), especially since he was so tired and apt to keel over.  That way we could have contact and still remain comfortable and without putting pressure on the tender bits.  I laid him down, put up his side rails and got out the laptop to keep myself busy.

He would nap for an hour and then be awake for an hour and then fall asleep again.  All the crying wore him out; he cried every time somebody took a blood pressure or approached him with a stethoscope.  By lunchtime our room was filling up.  Despite the increased level of noise (and each new set of parents complaining about having a shared room), Wyatt still slept through it all.

Wyatt woke up about 1 p.m. and I tried to coax some milk or juice or even a chicken nugget from his tray into him.  He ate one chicken nugget slowly and only took in 20-30 cc of liquid at a time.  He was still getting lasix due to his puffiness and he had to drink.  I offered him juice and milk and water over and over again.  He was happy to chew on the bottles mostly;  without warning, he would suddenly fling them across the room before falling asleep again.

Most of the afternoon went by with Wyatt sleeping.  In a brief period of wakefulness his nurse brought him additional toys from the play room.  One was a musical caterpillar that he had at home which provided a sense of familiarity, while the other was a type of activity centre with all sorts of lights and buttons and sounds.  Except this one was completely in French.  The rest of his waking hours while in hospital would be peppered with "coo coo bébé!" and a smattering of French ditties that I couldn't quite follow.

I ordered a variety of things for his dinner that I thought he might be able to pick at.  I had to admit, I was impressed not only with the nursing staff, but also with the actual workings of the hospital.  Wyatt's nurse called in his dinner order and less than 10 minutes later, it appeared at the end of his bed.  Need a bed cleaned?  Boom.  Done.  Need a crib swapped for a bed for an admission?  Done, less than 5 minutes.  They may not be able to schedule clinics worth a damn, but the people that actually work there, work.

Vocalizations were pretty minimal with Wyatt, possibly due to a sore throat that would have been caused by the breathing tube.  He was also into really long hugs or kneeling for a few seconds, before drifting off back to sleep.  At dinnertime, I was able to get some applesauce and three french fries into him along with a small amount of juice.  Sean arrived shortly afterwards (Quinn and Zoe were on an adventure with relatives).  Wyatt immediately began to smile and was suddenly up to a lot more, including a lot of peekaboo and goofiness.  He also suddenly developed half an appetite by eating half of the remaining fries and several strawberries.  His evening nurse was impressed as she mentioned that most kids don't eat for 2 to three days after surgery. That settled me down a bit as I was getting really concerned.  This kid would normally eat a dead frog if you gave it to him.  Wyatt not eating or drinking was really out of character and it concerned me.

When he was asleep, we pinned his drains to his back in order to let him sleep on his tummy (which he did and quite happily).  Although parents are cautioned about tummy time with babies that undergo heart surgery, it is okay with bigger kids if they position themselves that way.  If it hurts, they will stop or reposition.  When he was awake however, he would scoot around his crib and generally get tangled up in his drains, regardless of where they were positioned or pinned.  I was really looking forward to their removal, to be honest, as I was afraid that he would pull them out by accident (which would cause a pneumothorax, a medical emergency).  His drainage had slowed to almost insignificance and it was determined that they would be removed the next day.

In his own Jammies, tangled in drains and yet, contemplating his toes.
His dinner eaten, he fell asleep again at 8:30.  Sean and I took our leave;  he to go collect the kids and put them to bed and I to go back to the hotel and get some sleep.  I was exhausted again.  On the surface, it seemed that I hadn't done much all day, but the sitting around, distraction and constant worry does take a toll on you. I had a bath and was in bed, asleep by 9:30.
On a Friday night.
In Toronto.

Pathetic, really.

Getting all his IV lines and wires out was big news, for sure.  Compared to the day before however, his progress had slowed a bit.  He was tired and now that there was less things poking him, he could get some much needed healing rest.  It had been a rainy day, a sleepy day.  After the wailing despair that had a accompanied getting the gear removed, it was wonderful to see him sleep comfortably on his tummy, his little feet crossed at the ankles.   I was moving out of the hotel in the morning, Wyatt would be getting his own room and Sean and the kids would visit in the afternoon.  These things helped me sleep too.  Which I did, like a stone, in my last night in the Fortress of Solitude, listening to the rain.

-----
*Adagio - A musical term meaning slowly, "at ease".


The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

Saturday, April 13, 2013

Surgical Suite: Allegro con brio*

Somewhere, off in the distance, a baby was crying.  I woke up with a start to find myself in my hotel room with Sean snoring beside me.  The city hummed steadily outside.  I tiptoed into the bathroom and quietly called the Critical Care Unit to inquire on Wyatt's condition.  He was having a restless night it seems, but did eventually settle with some top up medication.  I was glad of this and sought my bed for a few more hours.

Despite having the ability to sleep in, we were still awake at 0630.  We had ordered our breakfast for 0800, so with some time to kill, we took our time getting ready, checked our email and checked in with the rest of the world.  Another call to Wyatt's nurse let us know that he had a couple more brief periods of restlessness, during which he had kinked his art-line and catheter.  As a result, they had both been taken out.  They had also sat him up in a chair to make him more comfortable and he was currently having a period of very restful sleep.  Knowing that he was in good hands, we ate a leisurely breakfast and made our way to the hospital afterwards.

When we arrived, he was sitting up in what looked like a car seat, playing with Scout.  Once he realized that it was Sean and I on either side of the bed, Scout was history as both hands shot out to seek ours.  His eyes did well up momentarily with a wave of pain, but it was pretty evident that he had missed us.  A few careful kisses and touches later, he was much more settled.

He was on several IVs through which he received medication and fluids, but he was very happy to get 60 ml of 1/2 apple juice, 1/2 water.  He looked like he would take more if given it, but with the IVs they did not want him to get overloaded.  As it was he looked a little puffy and they had started him on Lasix to try and clear some of the excess fluid.  He was still receiving Tylenol every four hours,  Keterolac every six hours intravenously and morphine IV every four hours for breakthrough pain.  With all this on board, he would nod off at random intervals, so we would use this time to take breaks.

When we came back from lunch, Wyatt's nurse was changing the dressing on his central line.  That completed, he asked if we wanted to hold Wyatt.  I'm not even sure the YES! was out of my mouth before I was trying to scoop him into my arms.  Because of his surgery, I could not pick him up under his arms, but rather had to lift him as one would do with an infant, with a hand behind the head and one under his bum.   There was a comfy chair there and I sat back to try and sing my son's crying away.

It didn't exactly go as planned.

Wyatt is very used to assuming his own positions for comfort and sleeping.  He tried to crawl up on my shoulder, rubbing his incision and causing several of his sore spots to get poked.  I was very nervous about his central line and his pacing wires as he thrashed around a bit and I was trying not to hurt him as I repositioned him to sit on my knee.  A hopeless tangle who would not settle, we put him back in his chair a few minutes later.  Defeated, I helped sort out his tubes, put some "blow by" oxygen near his face and sang to him there.  He quieted and eventually went to sleep again. 

Chillin' like a villain on cardiology...
and trying to watch TV around Mom
There was talk mid-afternoon about Wyatt moving to cardiology.  However, things were very busy on the unit at the moment and there weren't any beds.  Sean took his leave and went home to collect our other two kids with the proviso that I would text/call if there were any changes.  I was surprised an hour or so later to learn that Wyatt was in fact moving upstairs to a room.  We packed up all his things and moved upstairs to a quad room that is usually used for "step down", but was currently slated as "overflow".  We were the only ones in the room for the first while, so it was nice to get him settled in his new chair.  He also has a TV, which immediately got tuned to Treehouse and settled him down immensely.  So much so, he had another nap.

This nap was a doozy.  We had just gotten the official OK for solid food, his tray had arrived and he had promptly fallen asleep again.  I waited and half dozed at his bedside myself, as I waited for him to wake up. I would startle with every call bell, code and phone ringing, but he managed to sleep through it all.

Shift change came and went.  His nurse was a blur in and out of the room as she was handed an admission right at shift change (which is probably one of the nastiest things you can do to a nurse). Wyatt slumbered on.  At one point, I started flicking his feet to try and wake him up.  He was OUT.  Somewhere around 7:00 I called home and got the kids to say "WAKE UP WYATT!", which turned out to be quite effective.  He woke up, looked around and took a little juice.  He was able to eat a tiny yoghurt as well, but you could see that this act tired him out.  He played with Scout for a while longer and the nurse came back around 9:30 to check in with us.  We sorted out his bedtime routine, I gave her tips for how he likes to go to sleep, helped her with meds and whatever treatments and assessments needed to be done and his eyes were closing once more when I left just shy of 10 p.m.

Once back at the hotel I made a few calls and Skyped a friend of mine.  I was nearly falling off the computer chair at 11 when I hung up and finally went to bed.  I'm not sure if I remember my head hitting the pillow or not, but I remember the next morning seeming like it occurred a blink afterwards.

One of my girlfriends (who was a CCU nurse for years) told me once that after cardiac surgery, the transformation was incredible.  In her eyes, you have a patient, who for all intensive purposes, is dead on the OR table.  They are brought back to life and within hours are eating, drinking; a few days later they are generally themselves again.  I was not expecting such a journey to take place within 24 hours,  but, here he was.  My baby was still very sore, still on loads of pain medication, still covered in lines and tubes and drains and things, yet trying to wave his silly mother out of the way so that he could watch his shows.  It was incredible to see.  His tenacity, his spirit continues to astound me.  He is fierce.  The pace at which he had accomplished so much was almost dizzying when you think about it. I was hoping this tempo would be maintained, because if it did, we would be home before we knew it.


------
*Allegro con brio is a musical term meaning "quickly, with spirit".


The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

Friday, April 12, 2013

Surgical Suite: Grave*


It was here.  Wyatt's surgery day.  The day that we had been both dreading and waiting for for over two years was upon us.   Regardless of how well he grew and developed, it was always there, playing quietly in the background, undermining our confidence. It was time to address this now... it was time to change the song.  It was time to mend this broken heart.

The day started with a whimper, at least for me.  0300 is no time to be getting out of bed, but here we were, shuffling about our morning.  There was some last minute packing to do along with our usual morning things, which we did dutifully (albeit much slower). With one eye in the clock, I had opted to forgo my morning Tassimo and intended on picking up some much needed coffee en route.  We loaded our wee man in the car, a few minutes shy of 0430.  We were also very grateful for our friends who had volunteered to take Quinn and Zoe for a sleepover the night before.  While we three drove off into the night, our other two children slumbered, blissfully unaware of our growing tension.

My hopes for early morning coffee were dashed a few minutes later when I realized that it was too early to expect the Tim's in the gas station to be open. With traffic being so unpredictable, we had to press on.  The trip turned out to be fast and reasonably uneventful;  any and all traffic fears were quickly put to rest as we presented to the desk in cardiology at 0545, 15 minutes early.  Early, yet still coffee-less.

We were shown to a room and waited for our intake nurse.  Wyatt was in great spirits and had a good time playing with his dog "Scout" and his little jingle lion.  His nurse arrived to assess him at 0630 and it was at that time that we learned that we were going to be "second case".  This meant that we were going to have to wait until somewhere between noon and one o'clock, depending on how long the "first case" (first surgery) took.  Sean was noticeably upset and a bit curt with his response.  I shrugged it off... it wasn't her fault, yet he was right with what he said next.  This was exactly the kind of thing we had learned to expect from the hospital;  hurry up and wait.

Wyatt was his usual, giggly self.  I gave him his chlorhexadine scrub and changed him into his hospital jammies.  They were miles too big, so the results were a bit comical.  We were in one of the rooms with a daybed and with turning down the lights and closing the blind, we all had a little siesta for an hour or so. 

At 0830, Wyatt was allowed to have a container of apple of juice and he had 5 mins to drink it in.  He was pretty grateful and super happy, once he tasted that it was full strength and not diluted (which is what he gets at home).  After he had his juice, I headed downstairs in search of breakfast (mainly coffee).  While I was gone, Wyatt got to explore the playroom, including having a satisfying game of "Cloverfield on the Island of Sodor". He was tired when we got back, so I returned him to his "baby jail" crib and we snapped a few pictures for posterity while Sean headed off in search of breakfast.

Wyatt, showing off in Hammer Pants
By 1000 we were pretty bagged out in the room.  I was sprawled on the day bed, my sweater a blanket and jacket a pillow as I texted friends looking for an update and generally goofed around on my phone in my efforts to ignore the elephant in the room.  One of the surgical team had come in, made a positive ID check on Wyatt and inked his shoulder... which immediately transferred to his chin once Wyatt looked down to check out his new tattoo.  We had abandoned trying to keep Wyatt's pants on, as he would only wiggle out of them and then try and throw them at us.  After all, pants are for suckas.  By  1100 we had discovered the TV and the familiar noises of the Price is Right filled our tiny room.  By noon we were all in a drowsy haze.  By one thirty we were suddenly grabbing up all our things and heading downstairs to surgery.

We met the anesthesiologist and three of the nurses.  Before I knew it, it was time for Wyatt to go.  He so content chatting and flirting with the ladies that he barely noticed me kiss him goodbye and whisper a few things into his ear.  I was already fighting tears as I wheeled the stroller over to the surgical waiting room and checked in with the volunteers.  We had barely found our seats when we looked up to see ourselves being scoped out by another man in scrubs.

You have to understand, I am used to crotchety old surgeons, or cocky young hotshots with demigod complexes.  It was a great relief to find out that the kind eyes that met ours belonged to Wyatt's surgeon.  In a soft British accent, he apologised for not meeting us on our pre-op day as that is not the way he generally likes to do things. He explained the surgery once again, emphasizing the seriousness of the procedure and giving us some statistics to ponder.  In reality, 95% of all children that undergo this type of surgery survive and do well afterwards. However, there is a significant number that do not and that had to be appreciated.  He explained in more detail how he planned to repair the AVSD and the steps afterwards to get Wyatt off the heart lung machine.  He expressed his intent that Wyatt be woken up in the OR afterwards and hopefully get the breathing tube out as that would speed his recovery even further.  We shook his hand. I was trying to be nonchalant about wiping my tears away as we wished him good luck as he left to go fix my son's heart.

We went downstairs again with the intention of getting something to eat, but on my way into the food court, I found myself breaking down.  I was tired, frustrated and flat out scared for my son's life.  Food suddenly seemed to be a foreign concept.  Through a veil of tears, I found a table at the back of the cafeteria where I could park our stroller (now filled with coats and bags) and let free the tears that threatened to fall.  I checked in with a few friends and read the hundreds of good wishes, prayers and morale boosting messages left on my personal Facebook page, my group, the Down Wit Dat page, my email and text.  My friends had entreated their friends to keep Wyatt in their thoughts and people that I did not even know were rooting for my son.  My spirits lifted a little and I ate the half of Sean's sandwich that he had abandoned with a bout of similar nerves.  We found ourselves some tasks to keep occupied--drop off the stroller at the car, check me into my hotel room, check in with the kids--and went about completing all of that.  We even attempted to have a bit of a nap at the hotel, which didn't work out as I was restless and could not settle.  With nerves taught and almost audibly twanging, we headed back to the surgical waiting room.

We checked in again and let the volunteers know that we were popping downstairs to grab a bite.  She suggested that we run and grab something quick and then head back up, given the time.  Sean suddenly realized that he had to go "feed the meter" on the van and I headed up alone.  I had barely gotten situated when I looked up to see the surgeon walking in.  Wyatt's name was still on the board as "in surgery", so my surprise quickly changed to concern when I rose to meet him.

The surgeon's portion of the procedure was over.  Wyatt had tolerated it well and at that moment the rest of the surgical team were assessing the bleeding from the suture holes in his heart and once that had stopped, they would close the incision.  The surgeon was pleased that things had gone so well yet expressed a little remorse at the breathing tube having to remain in for a while longer.  He was able to close what was left of the VSD (it looked closed, but he put a couple of stitches in it for good measure). He had separated the common valve and created the two Atrioventricular valves and using a patch of Wyatt's own tissue, closed the hole in the ASD.  The valve on the right (tricuspid) was functioning quite well according to the echocardiogram that they had done on him immediately afterwards, however the one on the left (mitral) had a small amount of leakage, which was normal.  It would be possible, in the future that his valves would require a "tune up" and that Wyatt would have to be monitored by a cardiologist for the rest of his life.  He expressed that there were still a lot of things to occur this day, including assessing lab results to see how the rest of Wyatt had fared during the surgery.  Things looked promising, but the surgeon stressed that my son was far from out of the woods yet. 

An hour later, we got to see him for five minutes before shift change.  He was unconscious and still a bit of a mess.  He had two drains, an art-line in his groin, a central line in his neck, two chest drains, two pacing wires, a catheter and two external IVs, one in his hand and the other in his foot. His nurse told us that the team was waiting to see the lab results and based on those findings, he would be either extubated or left intubated for the night.  With shift change pending, we would have to leave for rounds;  once we returned after 8 pm we would know more about his status.  The tears came again as I whispered more words into his sleeping ear.  He stirred a little as I welcomed him back.  He knew I was there.  We took our leave once more and went to the waiting room to make necessary updates to family and friends.

We were completely exhausted by this point.  Our friends who were minding our other two kids insisted that they stay with them one more night;  Sean was to get some sleep with me at the hotel before attempting to drive home.  We ruefully agreed;  although we both missed the kids, they were happy and healthy and completely removed from all of this.  For that, we will be eternally grateful. 

I dialed the CCU's number at exactly 8 p.m. and were asked to wait 10 more minutes.  That turned into 15 minutes in the next call and then 15 more in the one after that.  In the meantime, a code blue had been called that had caused me to almost jump out of my skin.  There had been a few more occur that day and every time it knocked the air out of me.  I was starting to get a little frantic as I called in a fourth time;  thankfully, they let us in and I quickly went to his bedside.

You could tell that he was starting to wake up.  He would grimace and try and open his eyes. Although he was still sedated somewhat from the anesthetic, he was given morphine for pain and midalozam to help him relax and not fight with his apparatus.  Even still, he was obviously in pain as I stroked his foot and talked to him.  They topped up his pain meds while we were there and I started chatting with his nurse.  His tests were back and were good, but they were thinking on leaving him on the breathing tube overnight as a precaution. As he continued to fight to regain consciousness against the medication, I realized that our presence was not helping him sleep and heal.  We double checked phone numbers and gave instructions to his nurse to call us at the smallest change.  We kissed Wyatt goodnight, knowing that he was in capable hands and headed back to the hotel for a much needed drink and to catch a few hours sleep.

We were downstairs in the bar having a quiet glass of wine when my phone rang and caused the panic to rise again as I fumbled to answer it.  Wyatt's nurse called to tell us that Wyatt was now fighting the ventilator, trying to breathe over top of it and regain control of his breathing.  With this in mind, they had extubated him after all.  They would continue to keep an oxygen mask nearby ("blow by"), but he seemed to be doing very well breathing on his own.  I thanked her for a call and promptly ordered another glass.  My heart was still pounding and despite our current level of fatigue, I was going to need a little help to sleep that night.

Despite my best efforts, I cannot capture exactly the gnawing agony that followed us this day.  Although he has always required this surgery, he has been very healthy thus far.  You have all sorts of emotions that you encounter along the way, including the crushing guilt of potentially putting your child in harms way. You feel alone in your anguish and would do just about anything to take your child's pain onto yourself if it such a thing were at all possible.  I think one of my friends said it best as she posted the following to lift our spirits:
"Here's to being brave and scared at the same time. Here's to giving you room to be as you are, and to holding you all in the tightest of hugs. Here's to crying one moment and then laughing til you cry. Here's to forgetting to breathe and then breathing more deeply than ever..."
As we finally caught our breath after a day that seemed like days, we knew we were not alone in our relief.  The love of hundreds had enveloped us and helped us bear an emotional battering.   We would need it still, in the days to come.  However, this first step, this opening movement had been completed.  As the last notes of the day ebbed away, I closed my eyes and felt peace, for the first time in a very long time.

--------
*Grave (grah-vay) meaning slow, serious.


The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

Tuesday, April 9, 2013

Prelude


"After silence, that which comes nearest to expressing the inexpressible is music."
--Aldous Huxley

It has been quite the journey to get to this point. I have known since my twins were about 30 weeks gestation that Wyatt was going to have open heart surgery.  After all the appointments, after all the back and forth and the changing of dates, he will finally have his heart repaired tomorrow.  Our final preparations will happen tonight.  We will travel to the city in the early hours of the morning, our nerves taught, fraying... and hand our son's life over to the surgical team.

We've been in watchful waiting mode since the pre-op appointment.  Is that a sniffle?  A rash?  Is his stool looser than normal?   Doesn't he seem a little warm to you?  Any sign of infection, any slightly off colour secretion will cancel this surgery.  It is the thinnest suggestion of Spring here in Canada; this week it stopped snowing and began raining. As a result, all the viruses are still running strong.  We've stepped up the hand washing, the hibernation.  We've limited shopping trips and excursions and become completely paranoid about his overall "exposure".  For those that know me, this is totally out of character.  I believe in a healthy attitude towards germs, that challenging one's immune system is necessary. Now, I have to be very liberal with the Clorox wipes and I hate it.

There has been a lot of preparation to get to this day.  If, for some reason, his surgery is cancelled and not rescheduled within a three or four day window, it will be too late to reclaim my vacation time.  We would have to reschedule for later in the summer.  There are other, little piddling details too that add up and cause anxiety. After much soul searching, debate and general carry on, I've decided to find formal accommodations for the first three nights of Wyatt's hospital stay.  There is a part of me that feels a certain degree of guilt over this;  my Mama-ness feels I should be there, holding vigil at his bedside 24/7.  In reality, his first three days will be spent in the CCU.  He will be the most sedated and have the most amount of nursing care.  My bed would be a hard chair or a lounge shared with other parents.  I'm a little far gone past my university days, so crashing in a common room is not really going to happen.  My accommodations will have a shower and all the amenities which will keep the "thinking" to a minimum and the flexibility to a maximum-- especially if I had to make a 2 am dash to his side or, got back at that time and need a cheeseburger.  The real work starts when he is moved to cardiology when he will be more awake and in need of more distraction.  There is a daybed in the a bathroom in those rooms. I will be more than happy to camp out with him then.

Another part of this decision was, well, me.  I know me.  I will need an escape.  I will need to decrease the stimuli, to chill out and be quiet.  I will either not want to talk to anyone, or will want to talk to EVERYONE constantly, at least the first day.  I will either sleep like a stone or pace the floor.  I need a space to either sob at random or to stare blankly at the TV.  This makes me a crappy house guest for those that have offered.  I was only going to have my Fortress of Solitude for one night, but Sean convinced me to stay for three and reevaluate on the weekend.  I hated to admit it at first, but he was right. 

I've packed and repacked and packed again for urban survival casual.  I've done ALL THE LAUNDRY and shopped for ALL THE THINGS.  I even have a spiffy new "travel" (read smaller than my 18" one) laptop that will be both a connection to the outside world and a source of entertainment for Wyatt and I. Sean and the kids have a fridge and freezer full of food.  I feel that I can disappear for over a week and know that they will be fed and have clean clothes.

There had to be some degree of discussion with the kids as well.  In Zoe's World, "Mama gone!" will be pretty significant.  She's also been waking up at random for the last few weeks screaming "Noooo Wyaaaattttt!  NOOOOOO!" which, I have to admit, has creeped me the hell out.  I explained to her, as best I could the other day, that Mommy and Wyatt were going on an adventure soon.  I don't know what sunk in, but she looked at me levelly for a moment and replied "Okaymama" before wandering in search of something more fun (I think she's figured out how to blow me off).  Quinn required a different approach: a handful of days ago, he approached me asking for details.  He's a clever kid and deserved a proper explanation. I drew him a few diagrams and talked honestly about Wyatt's heart, how the blood is supposed to flow, how the lungs provide oxygen and remove carbon dioxide, how the heart itself works and how Wyatt's is different.  Quinn listened raptly, pointing out a few things here and there himself.  At one point, he must have gotten tired with my terrible drawing ability and went to get one of his books that has an anatomical representation of the heart.  I went through the explanation again, noting that he had absorbed what I had told him the first time around.  We totally geeked out together for about half an hour more and then at my insistence, watched a little TV together.  So far, the only fallout is a general concern for his brother's welfare and a brief serious discussion about the "heart/lung machine" that occurred a few days later at bedtime.  I know many parents probably would have glossed all this over, but I know my son.  He wouldn't have been satisfied with the "kiddie version". He is still concerned, yes.  But, he knows what is involved and seems to have given him a little piece of mind.  

As it turns out, Quinn also has the best teacher ever.  In anticipation for him being a little off about his brother's upcoming surgery, his grade one teacher is filling the classroom with some of his favorite things:  space, marine biology and superheroes to name a few.   She's also asked anyone who wants to wear Quinn's favourite colour to do so, to make things a little more festive.  I burst into tears when I heard this.  Sometimes the best supports come from the most unexpected of places.

I have made it through my last two twelve hour shifts and despite my fervent prayers, the gods of Psychiatry were anything but kind.  Tonight has seen me get home in one piece;  we have
put Wyatt to bed after his pre-surgical scrub bath, will finish packing and try and catch as much sleep as we can before 3 am. My other two are hopefully enjoying their sleep over and I already miss them dearly.

There is a knot of fear in my stomach that I cannot dislodge through reason or recognition.  I know that it is there.  I know why it is there.  Right now, I will pacify it and myself through comfort.  Through distraction.  I have killed many dragons in the days leading up to this point.  I have lost myself in my advocacy work at times and done a lot of soul searching.  There are pivotal moments in everyone's lifetime where your resolve, your stamina is tested.  This is one of those times for us.  I have to embrace it as such and find the music within.  As this new stanza unfolds for us we are mindful of the composition thus far... and those that have joined us in it. We are cautious, yet strain to hear the opening refrain of this next chapter in our lives, in Wyatt's life.  With a little luck it will just be like Wyatt himself:  wondrous and full of life.


The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

Thursday, April 4, 2013

Dream

"The whirlwinds of revolt will continue to shake the foundations of our nation 
until the bright day of justice emerges."
-- Rev. Dr. Martin Luther King, Jr.

Today is April 4th.

Forty five years ago today, a man named Martin Luther King Jr. was shot to death for speaking out about injustice, about poverty, about the denial of basic human rights and dignity.  His words, his actions shone a light into the darkest corners of prejudice and hatred.  

Eighty-two days ago, a man named Robert 'Ethan' Saylor died face down on a floor in a Maryland movie theater.  He died of positional asphyxiation after being handcuffed by three off-duty deputies who were moonlighting as security guards at the mall next to the theater.

His death too, has been ruled a homicide.

Ethan was not a civil rights leader.  He was a man who will always be defined by his Down syndrome.  His death is exactly what Dr. King was talking about.

It seems to be an easy thing, dismissing this man's death.  He had a developmental delay.  He looked differently, spoke differently.  Interpreted the world around him differently perhaps.  Took a little longer to respond to things than you or I probably.  The different.  The other.

Ethan died because he had Down syndrome.  Not that his chromosome killed him, or that his health issues, probably treated less aggressively due to his having Down syndrome, caught up with him quietly in his sleep.  He died because he did not live up to the stereotype of a happy, smiling, hugging man with DS.   He died, handcuffed by three sets of linked cuffs, in a 'hogtie' position, on the filthy floor of a theater.
"...a promise that all men...would be guaranteed the unalienable rights of life, liberty, and the pursuit of happiness"
There is a lot of anger in the various DS "communities" out there.  As parents, we often try and shield our kids and ourselves from the ugliness that is out there.  We involve ourselves in our chosen groups and turn our focus inward.  We get complacent, insular... and often forget how terrible those who were different had it in the past. We forget how hateful society really can be.

With Ethan's death, our innocence has been lost. 

It is painfully clear that this can happen anywhere at any time.  This isn't just a random incident isolated to the state of Maryland.  This story comes to us from San Diego.  This story comes to us from Guatemala. This story comes from the UK, where a family was asked to leave the theater as their child with DS was "laughing too loud" at a comedic film.  This story comes from New Jersey, where a teenaged couple, instead of being taken to the correct seats, were separated and made to sit elsewhere. 

There is a lot of anger floating about.  Although ruled a homicide, those that are responsible for Ethan's death walk free.  In fact, at first they went back to their regular day jobs as if nothing had happened.  After a few weeks, they were placed on "Administrative leave".  There is a demand for justice, for this life lost.
"I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident: that all men are created equal."
We have lost our blinders when it comes to how severe the hatred is out there.  Each new story tries to excuse the actions/inaction of everyone in that theater by portraying Ethan as a monster.  Instead of "young man dies", he had "anger issues".  Instead of "positional asphyxiation", he had "heart problems".  There aren't people carrying placards outside every government building and movie theater denouncing the existence of those with Down syndrome, true.  However, every online source covering this case has a litany of comments from ignorant, vitrol spewing people.  I'd re-invoked my rule of "don't read the comments" some time ago, but many parents now are viewing the extent of society's contempt for our children with reoccuring themes such as "where was his handler?", "anger issues", "retard strength" and yes, even "broke the law/deserved punishment" and "he deserved to die".   We tend to shield ourselves against such negativity; it is now there, in black and white, in our faces. There is no escaping it now;  we can't chalk this up to childish pranks or attention seeking ''shock jock' disc jockeys.  These are our neighbours.  They hate our kids.

Many people are voicing feelings of abandonment by the organizations representing their children.  People have realized in the last while that the charities that they have been donating to all these years do not advocate as they claim to do.  The giants are slumbering.  Although one has roused and briefly mumbled, those with the loudest voices of all are silent.  Passive.  Allowing their inaction to speak for them instead.
"I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character..."
We would like to think that all our children, not just the neurotypical ones, can walk freely with their heads held high and achieve whatever it is that they wish to achieve, to live to their potential.  That the shape of one's eye, the 'tone' of one's muscle, will mean nothing more than the beautiful variance that is humanity.  We parents feel keenly the looks, the stereotypes, the assumptions. Those living with Down syndrome are stung by the inequality and lack of representation.
"I am not unmindful that some of you have come here out of great trials and tribulations..."
I was talking to a friend one night who looked at me at one point and said "It is never "off" for you is it?  There is no time when you are free from all of this [prejudice]?"

No.  There isn't.

There is a certain bone-weariness that comes with that. It in turn, makes you want to isolate yourself further.  To stop talking.  To hide once again and pretend that this is all not happening.
"But there is something that I must say to my people who stand on the warm threshold which leads into the palace of justice. In the process of gaining our rightful place we must not be guilty of wrongful deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred.

We must forever conduct our struggle on the high plane of dignity and discipline..."
I've heard this one too: "The problem with this is that there are too many passionate parents."  This is right, but not for the reasons that the author intended.  Parents are all too human as well.  Full of the same foibles as any random sampling of the population would be.  If anything should put to rest "only special parents are given special children" chestnut, it is a good look at this membership into the "Trisomy 21 Parenting club".  You will find the same personality disorders, the same secondary gains, the same attention seeking behaviour.  Because of this, some of the louder voices are too easily perceived as shouting randomly, by not only those minds we wish to enlighten, but by our own people.  Instead of  coming together, we are driven further apart.  Some do quite successfully talk the talk and walk the walk... but still, will never be able to fully accept their own flesh and blood as their own and it saddens me even further.
"We have also come ... to remind America of the fierce urgency of now. This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism. Now is the time to make real the promises of democracy. Now is the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice..."
This is a time of struggle.  This is a time of seeking social justice.  This is not a time to 'let nature take it's course' or win hearts with cute pictures.  This is a time of action.  We don't have the luxury of doing it any other way at the moment.  Ethan's death has crystallized exactly what is wrong with society and its treatment of those with Intellectual Disabilities/Developmental delays.  If we let this go, if we lie down and go quietly into the night as those that make policy would have us do, we are globally condoning the prejudice and brutality in the articles I linked earlier.  If we stop raising our voices and getting "uppity", if we allow things to continue on in more gradual way, we will be shown our "place" again and expected to stay there.

My son does not have a "place", other than at his parents and siblings side.

We need to take action.  Regardless of what country, what city you live in, these events or ones similar are occurring there as well.  Those with Down syndrome, those with Intellectual Disabilities and Developmental Delays are being disregarded out of hand.  It is time to stop being the other

We need to write.  We need to speak out.  We need to act.  We need to represent those that have no representation.  We need to get our message heard and our sound amplified by those with bigger voices.  We need those living with DS to have a larger say.  We need more self advocates.  We need visibility.

I too have a dream, you see. 

Raise your voice.

Let freedom ring.

----------------------
King, Martin Luther, Jr. "I Have a Dream." Lincoln Memorial, Washington D.C. 28 Aug. 1963. Speech.
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