Saturday, August 9, 2014

Maspeek!

Sometimes being a parent of a kid with extra stuff and having PTSD feels like a constant cycle of some part of my heart getting ripped open and slowly healing and then getting ripped open again just when it's beginning to finally knit back together. Even minor, non-life threatening deviations from "normal" feel excruciating.

I felt so great after my post following Simon's surgery and that I had healed parts of myself wounded by our experience in the ICU.  That may be true, but goddamn if I don't still have PTSD. The roller coaster has taken another nose-dive, or at least my heart has. After my post, it got to enjoy about 24 hours of joyful loft before yet another pinprick sent it sputtering down to the floor. The experience of being carefree is a luxury that I have never fully appreciated until now.

Three days after after Simon had his g-tube closure surgery, I took him in for his annual checkup in preparation for the new school year.  Our doctor did all her regular poking, prodding and asking questions and then at the very end, checked on something, unrelated to his heart, that we've been watching for years.

I'm going to be intentionally vague about the details because it's something Simon might not want out on the internet when he's 14.

Suffice it to say that at THIS visit, our doctor said it was time to have an ultrasound to see what was really going on. She didn't have much more information to tell us, but I left with the knowledge that my son was likely going to have yet one more thing that would set him apart from his peers. I left crushed and pissed and wanting to shake my fist at the sky.

"MASPEEK!"
(Essentially, "enough is enough" in Hebrew. )

I came home to tell Laura the news and she just stared at me, almost expressionless.  "What the fuck?", was all she said.  "Yeah, exactly", I replied, feeling equally flattened.

We decided not to really say anything to anyone until we had more information. For me, it's mostly because I'm just exhausted from the endless waves of drama over the past 6 years. I have been fighting the urge to spin out into reckless raging at the universe about this one-more-thing until we have more information, knowing that I'll need to conserve that energy to make it through the terror that will accompany one more diagnosis, even if it's not life-threatening.

This past Thursday, Laura did a double whammy ultrasound appointment and g-tube closure post-op check up.

His g-tube site is closing fine.  Great.  It should be. Let's move on.  I'm over this one.

At the other appointment, the ultrasound tech, and ultimately the doctor who was brought in, could not definitively tell us what they saw but are almost sure it's the condition we suspected.  Laura left with the knowledge that Simon may have to have an MRI and would likely need to see yet another specialist. We would need to follow up with our pediatrician to figure out next steps.

That night, our pediatrician called just as we were parking the car to go to a movie for date night. Laura put her on speaker phone. As she spoke, I found myself slowly crumpling into a ball, my face on my hands, slowly shaking my head back and forth. She told us it was likely that he would need another surgery to prevent possible life-threatening complications later in life.  We would wait until "our" surgeon  reviewed the ultrasound to hear about next steps.  If this had been more on the front burner, we probably could have figured this out and done it when he was under for his g-tube closure, but...that ship has sailed.

The speed at which joy was leaking from my heart sped up into an almost audible hiss.

We stumbled around the neighborhood trying to figure out what to eat for dinner and trying to not talk about what just happened.  We had both lost our appetite so we just sat in the theater seats alternately talking about totally mundane things, repeating variations on "Another surgery? You have got to be fucking kidding me! Can we just get a goddamn break?!?"  and and trying to figure out the best time over the next year to have the surgery. There is no major hurry but it needs to happen before adolesence and we'd rather just get it over with.  Not the best date night we've ever had, that's for sure.

It's better now, but for the first 24 hours after talking to our pediatrician, every 20 minutes or so I'd remember the new bullshit and feel an almost physical weight pressing on my shoulders.  If it didn't feel so oppressive and awful, I'd marvel at how accurate the phrase "having the weight of the world on your shoulders" is.

We haven't said much to Simon because we don't really have a lot of details.  I'm kicking myself for saying out loud so many times, "This could be the last time we could ever need to be in the hospital" as we were leaving a few weeks ago.  I'm not particularly supersitious but...damn it.

We've been having a great time in spite of all this mishegas.  We've started something we're calling Mitzvah Wednesdays- trying to do good deeds as a family on Wednesday nights. Simon has been super into baking so this past Wed we went out into our neighborhood and distributed the goods.  It was spectacularly fun.  Simon assigned the superhero alteregos to each of us...












There is always an opportunity to do a good deed and a good deed with always make you feel better. My goal over the next few months is to try to remember this...

Wednesday, July 30, 2014

These Moments

There are these moments

The one where Simon and I are lying in bed and he's about to fall asleep. He turns over and lays his head on my chest. "Will you pet this cat?"  I begin to pet his head and he says "Mmm it would make this cat so pleased to have you pet his head." (Where does he learn that stuff?)

There was the one where tonight, watching the movie Robots, he begins to laugh so hard at the farting scene that he can barely catch his breath.

The one where last night, when we took off his steri strips from his surgery site and saw what looked like a gaping hole where there should have been a nicely healing sutured up incision and I thought I might not catch a breath from frustration and the feeling of 'if it's not one thing then it's another.'

The one where after the anesthesia wore off in the hospital a week ago Tuesday and Simon was able to walk around the hospital wearing his surgical cap giving out shots and hugs as a 'Hug-ologist.'

The one before that when he emerged from the anesthesia full of rage and all my heart could do was nod "yes, little boy. You have such a right to this rage"

Then the one where he was hysterical with laughter as he and his cousin Charlie battled with water guns against the all powerful water-spitting red-headed whale-shark (otherwise known as Mama/Auntie Jaime).

There was the moment the other morning when he had 3 bites left of breakfast with the promise of iPad time if he can finish in the next 10 minutes and he loses his chance because he keeps the first bite in his mouth for all of those ten minutes without chewing or swallowing and I think I may never ever regain a sense of calm or enjoy my child ever again.

There's the moment when I breathe a huge sigh of relief when I have managed to successfully cut all of his fingernails in one go while he stayed asleep.

Then there's the one immediately after when my back spasms because of the awkward angle that I was in leaning over his bed and wonder when the fuck I'll be able to get him to let me do it while he's awake. That and haircuts. You sweet child with early medical trauma and sensory issues, you.

There was the moment this morning when I couldn't get a hold of any of his doctors to tell me that yes or no it's totally normal for there to be a gaping hole in his abdomen 7 days after a surgery to close up said hole and I just lost my shit sobbing like a kid that just walked a parking lot the length of a football field barefoot over small lego pieces to get to the gates of Disneyland only to be told that there were several more things to do before getting to go in.

Or, the moment when during his annual check up, right before we're getting ready to leave with an everything is great, keep on keepin' on there's the bomb of I'm a little concerned about .... let's run a test that may or may not tell us yet another thing that your kid might have to live with for the rest of his life.

Of course there's also the moment when you learn that another kid at camp is telling his parents that he's so excited that he's made a new friend at camp and his name is Simon. That's a really good one.

There are also those moments that are old but come floating up in your memory every year around this time.

The one where you first heard a wheeze coming from your 3 month & 3 week old baby and thought twice about waiting to take him to the doctor because Mommy and Me swimming in the Berkeley warm pool might actually be good for him if it's just some congestion.

The one where the ER doctor comes in to tell you the result of the chest x-ray to confirm that it's just a case of pneumonia and in a tone you'll never forget says "So, it's not pneumonia (millisecond pause), it's his heart."

There was the moment coming back from our heart transplant consult at Lucille Packard before we could even reach the double doors of the ICU at Children's Oakland where my feet wouldn't go any further and I collapsed.

There was that dreamy moment just a week later when the Carvedilol did it's magic and we had an unrecognizably happy baby to get to know.

And the morning we left the ICU. And the day he surprised all of us and walked his first steps like he'd been walking for months. And the one where he asked for decaf coffee goddammit.

And so many more in between doctors and therapy appointments and birthdays and taking out his G-tube so that for the most part he is an invisible walking miracle.

...except he's not. He is such a bright light. People notice it.

He is my infuriating, complex, surprising, hysterically funny, always changing, beautiful and strange Simon.  I love him fiercely. I'm taking damn good care of him and he's thriving in spite of it.

Jaime is the one that I want to be doing all this shit with and thank god she feels the same cuz lord knows this was not what she signed on for when I first said 'let's do this thing' 12 years ago.

Six years ago August 1st, our family was rocked so hard it should have splintered. It didn't and as hard as some moments have been, they have also been held by so many and knitted my family together in that same way that a broken bone is stronger for it in the place it fractured.

This Fitch-Jenett family, this trio, and all the many spokes that make up the whole, we are thriving in spite of so much. Six cycles around the sun. Six seasons of parenting plus. Six years of feeling blessings and curses in ways that I couldn't even imagine. Six years.

Great thanks to Simon and to Jaime. Great thanks to each one of you that have helped us get here.  And last but certainly not least, great thanks to one hell of a sense of humor. Yours, mine, Simon's, the whatever-you-want-to-call-it-thing-that's-greater-than-the-sum-of-the-parts. That.

Yeah, I think he's ready to take the tube out


The Force is strong with this one


Time with MM


A Knight getting ready for his journey


Snuggles with PopPop after an exhausting round of golf


We're #1


Love Family Farm time with G'Paw


Doctor HuggyPants


That sense of Humor mentioned earlier 
clearly comes from both sides of the family


Maya and Simon, riding the rails



 Reading with MM, booty butt grabbin' with PopPop.


There's so much healing going on over here. It's really good (and hard sometimes) to be us.


Friday, July 25, 2014

Healing

I think some of the parts of me that were so wounded by our experience when Simon first got sick were fundamentally healed during this last visit in the hospital.  I can't speak for Simon, but I can tell you that he was having such a good time that he didn't want to leave when it was time to get discharged.  I don't know what to call that exactly, except for a shining example of resilience.

Simon first went into the hospital 6 years ago this August 1st.  That night was the closest thing to hell I can possibly imagine.  I have chewed it over in my head so many times, but I have no idea what details I have described and to whom, for there are very few people I would have wanted to burden with the stories when they still felt so raw and unhealed.

I am feeling like it's time to tell some of those stories as we are approaching our 6th anniversary.

On August 1, 2008, it took approximately 9 hours from the time we entered the ER at John Muir until we got to bed 7 in the PICU at Children's Hospital Oakland.  At the time it felt like such an arduous journey just to get into that bed...I had no idea what the next 9 hours would hold.  At about midnight, Laura and I found ourselves in a dimly-lit, curtained-off corner of a big noisy room.  Our area was cram-packed with a very high-tech platform for Simon to lay on, a huge array of monitors, a shitty cushioned fold-out chair/bed and eventually, once they got tired of us sitting on the floor, a huge wooden rocking chair.

We took turns trying to lie down on the chair/bed to get some rest and sitting in the rocking chair holding an oxygen mask up to the face of our panting, sweating, wheezing, wide-eyed infant who sat bolt upright while it got progressively harder and harder for him to breathe.  Our eyes flicked between each other's eyes, his terrified tiny little eyes and the monitors that showed heart and respiration numbers steadily rising as the hours passed.  Every time the nurse came in to re-set the alarm threshold higher to stop the incessant clanging, we'd ask her again what the normal range was, to see how far we were drifting from the landmark.  Every hour, a respiratory therapist would come in and apologetically take a firm grasp of his tiny heel, squeeze it a few times and poke it with a lancet, desperately trying to get a drop of blood into an impossibly thin glass tube so they could check his blood gasses.  At about 2 am, they started bringing tiny heating pads to try to increase the blood flow to the heels as it was getting harder and harder to draw blood.   At about 4 am, he stopped crying when they poked him and simply flinched, working too hard to stay alive to be distracted by something as trivial as a metal spike jabbing into his new flesh.

About once an hour, the child next to us covered in casts, IV poles and monitors would wake up uttering the most god-awful moan, cry out for his mother and start to panic. There would be a flurry of activity, Mom would frantically try to calm him down and he would quiet down until the morphine wore off and they would start again.  This would inevitably happen just as we were either just starting to drift off on the chair/bed or Simon would just start calming down a tiny amount.  Every time the boy started crying out, I would get furious.  I would silently curse him, his nurse, whomever had been driving the car that hit him- I just wanted them all to disappear so that I could just FOCUS, DAMN IT and figure out what the hell I was supposed to do to keep Simon alive.

I have honestly never felt more helpless than I did that night, watching him slide closer and closer to death while a room full of professionals watched us going down.  I was so out of my area of expertise that I totally surrendered to the clinicians, even though our nurse looked more and more worried each time she came in. I didn't know what we were waiting for or what came next but it looked like everyone was just watching to see what was going to happen.

Finally at about 4:45 a.m,. a new respiratory therapist came in to take Simon's blood gasses.  He bent down to get eye level with Simon and stood back up.  " I don't like his color at all.  How long has he been working this hard? Do they know that he looks like this? How long has it been since they last came in?" he asked urgently.  We meekly answered that a nurse had just been in 15 minutes ago and he'd been breathing like that for hours. He quickly took as much blood as he could and left so fast the curtain flapped.

Within 10 minutes, the PICU attending physician appeared and asked to speak with us.  Our sweet nurse, who had been standing at her side, stepped forward to take Simon in her arms to comfort him while we spoke to  the doctor. What the doctor had to say was simple and to the point.  "Your little guy has been working really, really hard for a really long time.  He's basically been running a marathon.  His blood gasses show that he's running out of steam and he's going to poop out unless we help him.  What we want to do is put him on a machine that will help him breathe so he doesn't have to work so hard.  Can you guys agree to that?  We need to do this within the next 15 minutes so I urge you to make your decision quickly so that we can get set up. "  We silently nodded our assent as we processed that her words actually meant they were putting our 4 month old infant on life support.

We went back in to kiss his sweaty forehead, whisper final words to him,  and stumbled into the bright hallway outside the PICU.  Laura crumpled in a heap on the floor, releasing an almost inhuman wail. As I numbly knelt down to hold her, the reception clerk for the department raced towards us with keys jangling in her hands.  She led us to a conference room just down the hall and told us we could stay there for as long as we needed to.  Laura and I sat across from each other at a large conference table and just stared at each other in disbelief.  I'm sure people came in to check on us, but all I remember is that it was almost 9 a.m. before someone came to tell us that he was finally stable enough for us to see him for a few minutes.  They warned us that they had spent most of the last 4 hours trying to get an I.V. in him and that they normally wouldn't let parents see their child in the condition he was in, but they know we had waited a long time.

His tiny 11 pound body lay still like a piece of meat on a big waxy blue paper sheet, an unnatural orangy-brown tint from the Betadine they had swabbed his whole body with as they tried to start an IV again and again.  I tried to take in the 12 pinhole sized marks oozing blood from every tender spot on his body and feel anything besides revulsion when I noticed the plastic butterfly wings of the IV needle coming out of his neck. Somewhere in my brain, I registered relief that he appeared to be breathing peacefully and that the numbers on the monitor were at least 1/3 lower than they had been when we left him.  When I knelt down to kiss his face, the sharp sterile smell of oxygen and plastic tubing and terror greeted me instead of the sweet, milky smell of newborn. We whispered words of love and encouragement over his unconscious body and then left to return to the confinement of the conference room to wait for more news.

About an hour later, with our parents present, we met with Simon's cardiologist for the first time and he gave us as much information as he had about Simon's condition.  All I really remember about that meeting is being told we would be spending at least 3 weeks in the hospital, they don't know any more about cardiomyopathy than they did 50 years ago and he had equal chances of dying, recovering or having a sick heart for the rest of his life.  The posts on this blog tell the story of the rest of those days...

This past Tuesday night,  as I stayed over with Simon  in the hospital after his g-tube removal surgery, I was swimming in flashbacks. Every time the 3 week old baby in the bay next to us woke up (approximately every hour), I was reminded of all the times I sat with Simon in the PICU trying to ignore crying babies while we pretended like everything was normal.  I tried tune out the nurses reporting out to each other at change of shift just outside our bed, unsuccessfully blocking out the details about all our neighbors.  I tried not to think about the hideous way the parents of  another child we were in the pre-op process with treated their child. And I especially tried to tune out the boy across the room who woke up every hour, moaning, crying out in pain and for his mother until there was a flurry of activity and his pain meds hit.  Him, especially him.

I looked over at Simon sleeping peacefully in an adult sized hospital bed, not hooked up to any monitors, and I started to cry.  I lay face down in that horribly uncomfortable chair/bed and cried and cried.   I cried for Laura and Simon and me, for the pain and suffering we endured.  Cried at the realization that things had been so awful in the beginning that my only option was to resent the suffering of a child crushed by thousands of pounds of metal. I cried for the boy crying out that night and for the boy I couldn't hear six years ago. I cried thinking about the way the faces of staff and clinicians we hadn't seen in six years lit up earlier that day and then crumpled when they recognized Simon, stunned by the handsome, tanned, healthy-looking boy he had fought to become.  I cried realizing how far we have come.

I had been feeling so much anxiety about this hospital stay, about having old feelings kicked up and buttons pushed and what I would do with it all.  Something feels settled, healed, calmed. I feel lighter than I have in years. Instead of turning my back on those old ghosts, I finally was able to bring them in close and give them the attention, love and forgiveness they needed to carry on their way. I will always feel sadness and grief about that time in our lives, and I don't know what the future holds, but something feels...filled in is the best way I can describe it.

Dayenu.
Viking walking the gauntlet

Amazing Child Life department letting us play with equipment before surgery

Hello?  Anesthesia?

Lemme see if I can see what this is going to look like

Getting settled in to the new bed.
Doctor Simon, the Hug-ologist, saluting


On his 3rd popsicle!


Getting an echocardiogram while we were there

Simon and Dr. Rosenfeld, his cardiologist, aka Dr. Hunkypants

Nothing more healing than cupcake decorating with cousins!

Laura's Mom, our niece Maya and Laura's sister Jen, looking tanned and relaxed!

A PopPop and his grandson (cousin Charlie)

A Mama and her Mama

The Fitch Ladies!

A classy bunch...

WATERFIGHT!!!
Waterfight joy!

If that's not what alive looks like, I don't know what is...




Saturday, July 19, 2014

Mayor of...Pretty Much Everywhere He Goes

Summer is magic for this kid.  Every summer, particularly the last 3, Simon's development goes into hyperdrive, especially his social development. I think it's something about the no-pressure environment of camp and being around so many typical kids.  Whatever it is, this summer the kid has turned into the freaking mayor of every place he goes.

Tonight was the end-of -session all-camp picnic for the camp he's been at for the last 4 weeks.  We're talking 500 campers, at least 100 staff and probably 400 parents.  It was crazytown.  And Simon?  He was the g.d. mayor of this place.  Everytime we turned around, some kid, usually a girl between the ages of 9 and 14, but also kids his own age, adolescent boys and even parents were chirping "Hey Simon!"  "Give me 5, Simon!"  "Come with me, Simon!".

Then, we found the award his counselor gave him.  Swear to god, the award he got was the"Oops, Sorry!  But we're falling in love with you" award.  See for yourselves:

When we signed him up for this camp, we made a decision to put him in the age group one set younger than his chronological age, so he's mostly with 5 year olds, even though he's 6.  I venture to say this may be the best decision we've made since we decided to have his g-tube (feeding tube) surgically implanted (more about that in a minute, actually!).  For the first time, maybe ever, he's getting to be a leader, has motor skills at or even a little better than some of his buddies, and is the same size as everyone else.  The biggest news is that not only is he charming the masses, but he's caught and captured the attention of a kid his own age(ish).

Maybe day 4 of camp, Laura called me at work with a tone of...well...awe is the best way to describe it.  She explained that as she was dropping Simon off for the camp bus that morning and saying "Bye Simon, have a great day", a parent next to her said, "Wait, Simon?  Are you Simon's Mom?  My son has not stopped talking about his new friend Simon since day one.  Can we please set up a playdate?".  When Laura picked her jaw off the ground, she of course said YES!  We haven't set a date yet, but apparently Simon and this little guy are super tight at camp.  It also turns out that his new friend had a cardiac issue and spent a few weeks in Children's Hospital Oakland when he was a toddler.  Like really does find like.

So...speaking of the hospital...we're going to stay there overnight on Tuesday because Simon is GETTING HIS FEEDING TUBE PERMANENTLY TAKEN OUT.  

I'll just give you a moment to digest that.

 (For new readers, know that Simon has been tube fed since he got ill at 4 months old and has had this piece of plastic sticking out of his abdomen since he was about 10 months old.  Pretty much his entire life. And he's now eating well enough that he doesn't need it anymore.)

Holy-freaking-yea-amen-hallelujah-yippee-cai-yai-yea.

And holy PTSD flare up as we are staring down the barrel of a mandatory overnight stay in the hospital.

I forget sometimes how heavily the hospital time sits on me because I have so many sweet memories there from the stable days.  But then last week I went to a meeting at a hospital for work and had to use a restroom on a med-surg floor. Between the smell of the hospital soap and the sound of a beeping monitor, I found myself having to take a deep breath and have a good shiver before I walked into the meeting.  It's been a long, long, long time since we spent a night at Children's Hospital Oakland and it's always been a little scary.

So...4 days from now.

Gulp.

I can't give enough kudos to Laura for getting us to this point.  That woman has literally given blood, sweat and tears to get Simon's eating skills strong enough for us to get rid of the tube.  She's sacrificed three weeks of her sanity to stay locked in a hospital doing battle with him in Orange County.  Done countless loads of laundry after violent, tantruming, table-turning, food-throwing eating sessions.  Worked tirelessly to figure out how to let go of the reins enough to let me try to do meals with him and watched me waste precious opportunities to get calories in him while I fumbled. She really is my hero and so very, very much the reason we are at this cusp.

And Simon.  Good lord, Simon.  That kid....he just...well, he's my hero too.  He's brave and funny and resilient and clever and stubborn as hell and loving and struggling and learning and fighting and curious and so, so fascinating, in the best way.  The way his brain works makes me question so many things I never would have stopped to think about and appreciate so many things I take for granted. He's really just about the most interesting child I could have ever hoped to grace my path.  Lucky for both of us, I take after my paternal grandmother and adore interesting people who make me really think. :-) And people who give good hugs. That kid gives the best hugs in town. Really.

And now, the requisite photo essay:
Mr. Hunky with his summer tan. His redheaded Mama is not jealous of that tan AT ALL.

Playing outfield for Team Coach Art!

Batter and his Pop Pop

Doesn't' everyone go to camp dressed like a Viking?

Darth Vader face off

El Macho (Despicable Me 2) kicks Captain America's butt

Water fight with cousin Max!

"Hee hee hee!  I got 'em!"