Friday 27 March 2015

What Happened Yesterday

I'm going to try and keep this short, as I want to go to bed at a semi-decent time.  The toddlers have gymnastics tomorrow morning, bright and early!

As many of you know, Wyatt had a close call yesterday.  He went through another emergency intubation in an effort to remove the obstruction in his airway.  He is doing well now, and we really couldn't be happier as his parents.

So, what happened, you ask?

Well, like most 22 month-olds, Wyatt put something in his mouth.  Something small, slender, green and it's made of plastic  Such a normal thing for most children of that age group - to put something in their mouth.

Let's sit with that for a moment.

Put something in their mouths.

This shouldn't instill fear into you.  Unless you're one of the few mothers on my FB who have children with trismus.  Than it does.

My other two kids, when they were Wyatt's age, put so much CRAP in their mouths, that I still find it boggling to my mind how they're alive today, but it really has a lot to do with their ability to eject out of their mouths and swallow.  Two things Wyatt has never been very good at.

How many of us, have used that simple finger-hook method and popped whatever was in baby's mouth?  I had to use that method many-a-time with Aila and Jude, especially when they snuck full grapes into their mouths, or playdough.  Or, their most loved snack, dogfood.

The finger-hook method just doesn't work for Wyatt.  You can't get into his mouth...  but I so wish I could, it would make a world of a difference.

So, I digress. What happened yesterday... Well, it happened in less than 60 seconds.  I can tell you that much.

I walked downstairs into our playroom, and placed Wyatt on top of train table.  This is part of our morning routine actually, I do this E V E R Y   D A Y.  Nine o'clock rolls around, and Wyatt goes downstairs to play with the trains, while I put the kids outside for the bus pick up time.  Anyway, Wyatt is downstairs with trains, Aila is already walking towards the bus, and Jude is stepping out of the house.  I close the door after saying the last of my good byes, and I go upstairs to get the three things I need to not lose my mind with another day of the same routine:  coffee, phone, suction unit.

Wyatt at this point has been alone for a little bit over a minute, maybe two?  I am walking down the stairs, and I can hear him coughing (Wyatt's version of coughing, since he cannot open his mouth).  He's getting over a bout of pneumonia, so I really don't think anything of it.  (He's been coughing at this point for almost 5 weeks).  I finally step into the playroom, and I look at him, and it's like - MOM IN ACTION.  (I forgot my cape upstairs).

I run to Wyatt, he's clearly struggling with something in his mouth, and he's actively choking.  He's red in the face (which is actually good), and tons of drool coming out of his mouth.  He's signing "suction".  He actually tries to do it himself at one point, and then he has an episode of cyanosis, which is bad.  This means his skin is going purple/blue around his mouth, and his facial skin is becoming an ashen colour.  He's loosing oxygen.  I grab my baby, the suction unit and run upstairs.  On the way upstairs, his eyes start rolling back.

I place him on his side on the couch, and I'm trying to see if I can get in there, but I know I can't. I know I can't get into his f*cking mouth, and I'm losing it.  This is the first time it's just been me and Wyatt, and I hate myself.  I hate every fibre of my being for leaving him alone.  I see his life draw in and out of his eyes, and I hate myself.  I became complacent when I shouldn't have.  I became a normal mom at some  point, and I didn't realize.  I thought things were actually okay. when things weren't.

And here is my little baby, my boy who put something very, very small into mouth, and I'm losing him.  This all happens within 60 seconds.

60 seconds.

He vomits blood.

My hands are shaking, I'm on the phone with a 911 operator.  An ambulance is on its way.  And all I can say is:

Stay with me baby.  Stay with me.  Mommy's here.

Because...I can't get into his f*cking mouth.  It's like a cement wall, mocking me.  Here I am mom - you've had almost two years to break me down, and you still haven't even made a knick on me.

The ambulance comes in what I believe is record time.  I'm running out with Wyatt, who is covered in a blanket, and is being held at an incline with his head turned towards the ground, in an effort to allow gravity to move whatever debris is in his mouth to move upward and forward.  Thank you Sir Isaac Newton for existing.

I get onto the ambulance, and the gurney follows, the paramedics get my jacket and purse from the house and we're on our way to CHEO.

Wyatt has another episode of cyanosis on the way there.  He is clearly struggling to breath.  The paramedics are listening to me though, which is helpful.  They listen to me when I tell them they're suctioning too much, or when they're going too far down with the catheter.  Do you know what is not helpful?  People who think they're too important (or crap drivers), to pull over for an ambulance with sirens on.  Not helpful.  And that's me putting it lightly.

The paramedics pull us out into CHEO, and it's bizarrely quiet.  Too quiet.  No one is waiting for us.

Than a paramedic disappears.

We're put into the recess, and one person comes in, than four.  Than six.

In about 60 seconds there are 30 people in the room.

It felt like 30...it may have been 20-25.  But I know the staff doctor at some point had to holler.

"Those who don't need to be here, leave!"

People disperse.

At some point Dad is there. I can't remember when or where he walked in from, but he was there.  I also don't entirely remember calling him, telling him we're on our way to CHEO.

I think this is the point that I realize I'm not wearing any shoes.

Anaesthesia is there.

ENT is there.

The staff doctor is asking ENT and Anesthesia what do they want to do?

And it's pretty clear at this point, we're going to the OR room, without the Xray to know what or where the obstruction is.

Wyatt is struggling to breath.  He is going up and down on his O2 sats, his little heart is working so hard to keep himself conscious.  He tries to go on all fours to eject it out at some point.

The OR room is finally prepped for us, with an emergency Trach tray for Wyatt.  Papers are signed.

We start moving.  When CHEO staff want to get somewhere fast, let me tell you - things get done.  Fast.

We're stepping into the elavator, and Wyatt starts to convulse.  He's having, what we now think, is a seizure caused by CO2 saturation.  This is when I start thinking: We're too late.  He's not going to make it.  I had never seen a seizure in real life, although, I had heard of them quite a bit. It's not nice to see. That's all I can say about it really.

Wyatt continues to deteriorate on the way to the OR room.

He isn't breathing right.  It's so loud and raspy.  And his little hand keeps flailing around like he's trying to hold my hand and I keep trying to catch it.

And as I finally catch it the doctor tells me, "Mom, this is as far as you go."

I'm holding my baby's hand, and all I can say:

"Mommy is going to see you again Wyatt."

And I did see him again.  But I can tell you right now, I did not believe myself at that moment that I was ever going to see him again.

Dr. McCormick was right when she walked into the waiting room, that she felt like I was saying goodbye, even though I had said the opposite.  I had clearly said I was going to see him again.  But moms know.  Moms know when something isn't right.  I genuinely believed I had killed my son that morning.  I had walked into the family room, and shrunk down against a wall and wailed.  I told my husband he had to promise not to hate me.  Not to hate me for what I had done to our baby.  Our social worker sat with us, tried to calm me down.  Parents from another admission, whom we were cohorted with, dropped off softer tissue paper for my nose and eyes.

For about 40-60 minutes, I thought I had killed Wyatt.

My self-hate that I had felt from my living room had grown into a pit of blackness of suffocating disbelief and loathing.  I wasn't fast enough.  I wasn't aware enough.  I had become complacent, and left him alone.

My life would never be the same without him.  I have been living, breathing and thinking WYATT for the last two years.  Two years of wondering and debating; What is Wrong With Wyatt?

Two years. Gone in 60 seconds.

I'm leaning against the wall.  I'm looking at my feet.  My socks are dry.  How are they dry?  There was snow on the ground?

The door clicks next to me.  It's one of the ENT doctors from the OR room.  Andrew left 60 seconds ago to go make some phone calls.

It's me and our social worker, Catherine.

He looks at me, and I've forgotten how to breath.

"Everything went well."

Inhale. Exhale.

"The moment Dr. Ryan got him sedated, things really settled down."

Inhale. Exhale.

"He didn't require a trach, and ..."

Me interrupting, with disbelief: "He didn't need a trach!?"

He looks at me, and said "No."

At that point I'm a mess.  I'm pretty sure I hugged him.  And I thanked him for going to school for 7 years.  Pretty sure that made it weird.

You saved my baby's life.  Thanks for going to school.

Anyway, all in hindsight right?

I need to make a list of compliments applicable to all of Wyatt's specialists...something like:

Dr. McCormick: Thank you for existing.

Dr. Corvo & Ryan: Thank you for existing.

Dr. Issa, Major and Tjajidi: Thank you for existing.

Erin Alcaide, RN:  Thank you for being who you are.  You go above and beyond. You need She-Ra's sword, Bat Girl's belt, and Wonder Woman's lasso.

Wyatt's nurses at CHEO : Thank you for existing.

Ottawa Paramedics: Thank you for existing.

And you know-  Sir Isaac Newton for discovering the laws of physics.  I guess you can be lumped in with the above, but you barely made the cut.

I can go further into what happened, but you get the gist.

CHEO saves the day!

Again.

I need to start making capes.

























Friday 13 March 2015

The Mish Mash Blog

I have been meaning to write about Wyatt's Christmas holidays, his long-awaited specialist appointments, and our YouCaring.com fund.  So, instead of doing three different blogs, I'm cramming this all into one.  And no, there will be no seamless segway from one topic to the next!

 This is why this entry has been dubbed The Mish Mash.




So, to give some kind of semblance of organization, I'll go in chronological order.  Sorta, this may jump around a bit.

Around the beginning of December we received a very large package from Kristy Botden.  Kristy is the sister-in-law to Melissa Botden, a wonderful mother we met in the NICU at CHEO, and our friendship has only grown when things usually sputter out and become long and forgotten.  Our friendship remained even after the death of Melissa's dear baebe, Dallas, and progressed regardless of our harried lives with Wyatt's disability.  Melissa is a true friend, and that bond between us, seemed to affect her SIL as well.  Kristy wrote a beautiful letter to us explaining how much she appreciated our friendship with Melissa and Phil, told us how she shares Wyatt's story as much as she can, and basically told us - I'm here for you, and I hope Wyatt gets better.  It was a wonderful surprise.  And December was full of surprises!



The third week in December, we received an email from an editor from NBCNews.com, asking if they can use Wyatt's story as one of the 'top' stories of the year, and because the editor had used our YouCaring.com fund in her piece, we received over $2000 in additional donations!  These are people who will never meet us, and were giving $5 here, $50 there, and even two $500 donations!!  It was amazing to see that kind of generosity, especially at the time of year when money is so tight for so many people.  Once Wyatt is seen by all of his specialists, (we're still waiting on an Orthodontist to perform a TENS on Wyatt, as well as, an MRI on his brain), and IF his tests (MRI) come out normal (again), we will use the money to seek opinions outside of Canada.  We have looked into two renowned children's hospitals, one in Texas and another in Boston.  So, once again, we find ourselves in the waiting game...

We finally got a call in January, coincidentally after a nice piece done by CBC news on Wyatt, that Wyatt will finally be seen by a speech therapist, physiotherapist and occupational therapist.  We saw all three specialists within the same week, and we came home with care plan, and received some really good answers to some tough questions.  For instance, Andrew and I stopped doing mouth physio on Wyatt, because the physio would increase the risk of Wyatt being able to insert objects/food into his mouth, which we didn't want.  So, we stopped.  But, we also wanted Wyatt to learn how to swallow and speak, so how could we get around this?  Well, it turns out, according to OT and Speech, that if we want Wyatt to speak and eat, we need to do mouth physio on him.  It's a risk we're just going to have to live with.  Wyatt is older, and isn't so prone to shoving EVERYTHING into his mouth, but we still catch him trying to put certain things in there.  Not pebbles. Or chicken.

One of the two awesome pjs made from his best bud Laura.  She bought a regular  zip up polar fleece, and inserted  two holes, with piping sewn around them.  One hole was placed near his ankle, for his 02 probe, and the second hole near his belly button, for this feeding extension!  It even has a cute, little matching flap to hide the hole!


Wyatt's Occupational Therapist gave us the green light to feed him orally, and her one recommendation was to not wipe the food away from his mouth as he is eating.  Apparently, the whole eating process is incredibly complicated, and by introducing a foreign object/material into the process, it can throw Wyatt's focus on what he is trying to do.  Makes sense doesn't it?

Wyatt's Speech Pathologist seemed to be quite happy with the amount of sounds he was making, and was also happy to learn that we have kept up with the American Sign Language (ASL).  We bought this great sign language package from Baby Signing Time, which included DVDs, CDs, books and flash cards.  Wyatt loves everything!  I highly recommend any one of these products to parents whom are interested in teaching their child sign language.  A big thank you goes out to the Military Family Fund: we would not be able to afford such a package, without your help!



Wyatt's Physiotherapist was just smitten with his gait: he was symmetrical, well-coordinated and was able to pull himself up with assistance.  He was five months delayed for walking, which she wasn't concerned about, as you only start to worry once the child has turned 2 years of age.  She had estimated that he would be walking by the end of the week. In the end, it would take Wyatt an additional four weeks before he took his first steps.

On Tuesday, February 10th, Wyatt took his first steps in front of his pediatrician, Dr. Issa.  It was such a momentous occasion, but it was a little bit confusing at first.  Dr. Issa was sitting on a chair, bent over, speaking to me (squatting down to be at Wyatt's height, who was cruising at the time) and we were guiding Wyatt between each other, not *quite* letting go of him.  And then it happened.  Wyatt was in my arms, facing me, he turned himself around, and let go of my extended arms, and walked into Dr.Issa's!!

Me:  Those were his first steps!
Erin (Nurse coordinator): Really?!?
Dr.Issa, nonchalantly: "Oh yeah?"

Turns out, Dr.Issa thought it was Wyatt's first steps taken in CHEO, but not his actual I-just-hit-a-major-milestone-first-steps.  Once the confusion was cleared up, there was ecstatic squealing (I could only imagine those outside of the room's closed doors thought when they heard the racket coming from our room), and tears.  It was such a great way to end a doctor's appointment. I am so happy that Dr. Issa and Erin were a part of such an important, and long-awaited milestone.  They are two very important people in our family.  I'm certain Dr. Issa has saved Wyatt's life simply by intervening with her medical foresight.

So, I've quickly gone through three months of topics that I really wanted to touch upon, and I really hope my next blog isn't a month or two later; rather a week so later, which has always been my intention! I've also added some new pages to Wyatt's website, whatswrongwithwyatt.com, so make sure to check those out in the Timeline section!