Life with a Trach

Every time I visit someone who hasn't seen us in a while, they immediately ask: how is Wyatt?  And I can safely say, that life with a tracheotomy has been great!  Sorta.  Things are so much easier in a way; Wyatt starts to cry and choke - pull the cap off, Wyatt puts something is his mouth - pull the cap off, Wyatt throws up - pull the cap off.


The not-so-great thing is that now our nursing is permanently transferred to nights.  So, now we don't have anyone there during the day to help us, which makes errand-running more difficult, resting is not an option most days, and going back to work has involved A LOT of paperwork on my part.


Yes - that's right, I've gone back to work.  And I couldn't be happier!  Yeah for typing at a computer! Yeah for talking to people above my hip height!  Yeah for doing SOMETHING NORMAL.  I never thought as a government worker that I'd be this excited to go back - don't get me wrong, I am blessed to be a federal employee, but my work...is ... dry?  My blood pressure will never rise because I will never find myself in an emergency situation.  My brain will not turn numbers and medical criteria into an operable function for someone to use in a life saving situation. Nope.  I just type at the computer all day, and answer mundane questions about stuff that really isn't going to save a life.  Yup.   And. I. Love. It.


So, back to Wyatt.  He is just the bee's knees right now.  No, he doesn't carry sacks of pollen on his knees, but he's great.  That's for sure.  He is loving life, he is full of energy most days and hasn't been admitted to CHEO for well over three months now.  I think we're approaching a new milestone!!  No aspirated pneumonias, which can still happen with a trach, but for Wyatt, it seems to very much help him with NOT aspirating.  You see, because Wyatt had the opportunity to develop a "good cough" he is able to very efficiently cough his phlegm/secretions out of his trach, so much so, that sometimes he actually coughs his cap off of his trach.  Have you ever been hit in the eye with a trach cap?  I have.  And you know that's not the worse of it.  Have you ever been in the eye/face with a wad of phlegm shooting out of a trach?  I have.  It's like being slimed by Slimer.

Gross.  But my love for Ghostbusters knows no bounds.


Anyway, for those of you who do not understand the difference between a "capped" trach and a regular open trach, here are some pictures:

Wyatt with his cap on.

Wyatt with his cap off.

 The cap that goes on his trach.

Basically, there is a cap that goes over the trach and Wyatt continues to breath through his mouth and nose like a normal child should.  If the cap is off, this means we are supposed to put what is called a Swedish Nose on his trach, to allow the air to be somewhat filtered and humidified.  If there is no cap or Swedish Nose on the trach this can cause Wyatt to be susceptible to viruses, bacterial infections, dust and other air contagions because he lacks the ability to filter the air (our nose does this for us: those tiny little hairs in there - yah, that's their job).  So, for the most part, Wyatt remains capped.  When he is really sick, that is, his nose is plugged up, we can put the Swedish Nose on him, and it allows for easier breathing; especially at night time.

So, you ask, why do you need a nurse at night, if things are easier with the trach?  Well, that's the hard part (does the irony escape me - no, it does not).  Wyatt still requires interventions at night, be it, a saline mask, suctioning or repositioning.  Same old, same old really.  He also has a humidity mask that goes over his uncapped trach at night, which requires monitoring.  And with all of the new medical equipment, it meant we could no longer get away with Wyatt spending his random nights out in the playpen in the livingroom (supervised by a nurse) and the rest of nights next to my bedside, in his crib.  Now, he has his own room and our middle child has moved into his sister's room and their large double beds have been converted to smaller, twin-sized bunk beds.  Everyone has had to change with Wyatt's trach, but everyone is still happy and that is what counts at the end of the day.

Wyatt still gets sick.  He is on antibiotics for Strep - and so is mom.  Wyatt still has his days where we panic, because we think something is in his mouth, but its been short lived panic attacks...not hour-long brain explosions of worry and hopelessness.  Seeing a hole in my son's neck is kind of gross, but it's not like we have the opportunity to see his bare neck often - the trach is in there 24/7 and is only changed once a month.  The changing takes seconds and is short lived.  It's easier to change a trach than to insert a Gtube, and ten million times easier than inserting a NGtube.  So, we were prepared for this new hardware.  We have the experience, the know-how, the chutzpa to get the job done and so far, with one yeast infection to date, I think we've done a pretty good job. 

Wyatt began his TENS procedure last month, so once again, we find ourselves in a new frontier for his trismus.  We are trying to 'exercise' his frontalis and temporalis muscles and the TENS unit allows us to do this with mild, electrical stimulation.  The results have been promising so far, he is talking more and our osteopath has been able to "get into" his mouth easier.  Dad has even been practicing oral stretching with Wyatt - that means, our 2.5 year old stretches his own mouth, by placing his own fingers into his mouth and pushing down.  It sounds simple, but this is kinda a big deal. 

Wyatt is also going to be monitored and seen by CHEO's Physiotherapy unit.  After seeing his neurologist last week, we were told there is a likelihood the tightness in his jaw will eventually migrate to his ankles and hamstrings.  To avoid this, Wyatt (er- his parents) will have to do specific stretching for the unforeseeable future to his ankles and hamstrings.  Have you ever done physio with a toddler?  Like most things Toddler - it's not easy.


Wyatt's website has been updated: www.whatswrongwithwyatt.com so check it out.  There is a new medical timeline that really simplifies the various tests Wyatt has undergone and their results.  A new section on his TENS unit, and loads of additional information has been uploaded.  Pictures are next!

Snow day with his best buddies!

 



The Pros of Having a Tube-fed Baby

This is a blog idea that has been evolving in my mind for about six months and I feel if I don't write this down now, it will become a novel.  A very uninteresting novel, since there won't be a denouement, or climax!  I want friends and family who think, "Why Amy and Andrew?  Haven't they had enough bad luck this year?" to think, "Hmmm, I never saw their lives from this perspective."  This is in regards to how we feed Wyatt.  Wyatt is a 100% tube fed, he has a mic-key button, or a g-tube, that allows him to be fed a liquid diet.

Don't get me wrong, it would be easier if I could just put food in front of Wyatt, give him a spoon, and let him mow-down, but let's face it, that isn't going to be happening any time soon.  Wyatt just learned how to swallow water, so when I say we're taking baby steps to eating, it's actually more akin to amoeba steps.

Wyatt's mouth 'wide open', which we can only manage to do when he's asleep.

There are a couple of key aspects to tube feeding that make our lives easier, most notably, that I can feed  Wyatt whether he wants to or not.  This may seem mean to the untrained, non-feeding-tube parent, but all feeding-tube children have to be put on regimented feeding schedule, so that they can get the exact calories and nutrients needed in a day to 'thrive'.  So, whether you agree with me feeding my child whether he wants to or not, is besides the point, Wyatt will eat four times a day at a 5 hour interval, because he MUST.  If we were to fly by the seat of our pants, or go by Wyatt's hunger cues, I can tell you right now, judging from the many forums of parents who have tried this, the child will not thrive, and the child may even come to hate 'eating'.  I should also point out, there is no doctor or dietitian who would give the go ahead with feeding on demand for the first years of life for a child, as they would want to see a quantitative measurement of your child's nutritional input, and thus, output, to ensure that they flourish into healthy adults.  Enough said, right?  Not exactly.

Wyatt attempting to eat in January 2015.  Since removing any oral foods from his diet in February, and his choking event in April, it's been difficult to convince him to eat.  

Wyatt just recently migrated from a 5-day feeding schedule, to a 4-day feeding schedule.  This took us approximately two months to complete, because it involved adding 5 mls of the last feed of the day (10 pm), to every other feed.  This means the 5:30 am, 10:00 am, 2:00 pm and the 6:00 pm feed, each had 5 mls added to it.  The measurement then changes from 240 mls to 245 mls week 1, and by week 8, we finally find ourselves at a 290 mls per feed.  Alternatively, the 10 pm has 5 mls taken off of it every week, until we reach 00 mls, and that my friends, is how we got rid of the 10 pm feed.   So, yes, I can feed Wyatt when I want to, but it is also very difficult to change his schedule.  There isn't much room for adaptation.

Another Pro to tube-feeding, and this is only possible because of the type of feeding equipment we have (a Zevex Inifinity), is that we can feed Wyatt anywhere.  Going down for a nap? No problem. Plug him in.  Need to run errands?  No problem, bring the coordinating back pack, and plug him in.  Want to go outside for a walk in the stroller?  No problem.  Leave the unit on top of the stroller's hood, and you guessed, plug him in.  I can even feed Wyatt while bathing, although it is slightly complicated now that he moves so much (the tube gets tangled with his limbs), and even while we are at the public pool.  We don't do this often, but we have done it.  The unit itself is 100% waterproof.  Not water resistant. Waterproof.

Wyatt getting fed while playing with his brother and sister.

Wyatt getting fed while on a stroller walk.

How he gets fed when he's too active for the pole.  His feed is placed inside this very expensive (and cheaply made might I add) backpack, designed for the feeding bag and feeding unit.  The tube is threaded through a hole on the side of the back pack, and connects to his extension, which is in turn, attached to his mic-key button.

If we miss a feed, whether it's because he's not tolerating it (happens when he has gastro) or simply because we weren't aware of the time, we can feed Wyatt at any point of the day.  Whether it's midnight or noon, Wyatt can get fed.  Again, another versatility that one simply does not have with an orally fed child.  I don't have to find myself with a cranky 4 year old at 6 am in the morning, because he didn't have his snack when he was supposed to, instead, I can feed him when I can, to ensure there is no inconvenience on my part.  Although, feeds beyond 10 pm, are always inconvenient!

Fell asleep while eating, and continues to get fed.

Most importantly, I can feed Wyatt anything.  Some tube-fed parents opt for the they-get-what-we-eat, so that may be hamburger and fries one day, and pizza another.  We however, would likely opt for quinoa and salmon.  Along with a ton of other foods, Wyatt gets the best of the best.  He is the healthiest eater in our house.  I can feed my two year old steamed beets, raw kale and organic quinoa.  Baked salmon, kefir, and whole grain pasta.  Boiled eggs, raw swiss chard and cantelope.  Bbq'd steak, cucumbers with the skin, and parsley.   How many 2 year olds can do that, and finish their whole meal without complaining?  Not many I'm afraid.  My older children, although they have been around all of these foods their whole lives, will not eat steamed beets, bbq'd maybe, but not steamed.   Quinoa is a gigantic mess!  And they only started eating beef this year, and actually enjoying it.  I don't have to sit in front of Wyatt, and wait (and beg?!)  for him to finish his meal.  He eats whatever I put in his feeding bag, and lucky for him, it is a great variety of fruits, veg, protein, dairy and fats.

The food-stuff for Wyatt's feed. Freshly picked out my garden: beets, carrots, parsnip, cabbage, tatsoi, swiss chard, parlsey, kale, and broccoli.  

The end product, as you can tell by the colour of the jars, there is a ton of variety in his diet.  This baebe does NOT go through 'phases' of food, that's for sure!

Wyatt's Busy Spring

In early April, Wyatt had somehow inserted a small piece of plastic from Jude's John Deere toy into his mouth, and had tried to ingest it.  If you really want the details of this event, you can read the previous blog post!  Needless to say, he required an emergency intubation, which left him under sedation for over 36 hours.  During these 36 hours, Wyatt had some very important tests performed, tests that can only be performed when intubated.  Namely, a MRI of his brain, brain stem and jaw.  He also had a CT scan done of his jaw, and an eye exam.

He's my little superhero in so many ways.

We had a Case Study done at the end of April, which aligned perfectly with Wyatt’s emergency intubation. It took Dr.Issa and Erin Alcaide, our Nurse Coordinator over four months to ensure this meeting of all Wyatt's specialists came to fruition.  At his meeting there was his Geneticist, Dr. Graham, his Neurologist, Dr. McMillan, his Anesthesiologist, Dr. Corvo, his Speech Pathologist, Laurice Henry, his Plastic Surgeon, Dr. Phillips, one his ENT doctors, Dr. Barklay, and one of his dentists, Dr. Luden.  A lot of names to remember... now just try organizing a day on their schedules where they can all get together and discuss one client!

Feeling Patriotic.

The original intention of this meeting was to decide, or should we say, convince Dr. Corvo, that Wyatt required intubation to get the MRI done of his brain.  He hadn't had one since he was days old, and any doctor will tell you, a baby's brain changes in leaps and bounds in the first year.  Instead, this meeting was to discuss the findings of the tests performed during Wyatt's intubation from his event in April.

Drum rollllll, please.

Everything came out normal.

Gasp!

Next step was to get a mitochondrial DNA test with a muscle specimen,  which we had from Wyatt’s frontalis muscle biopsy in May 2014.  Unfortunately, a series of events occurred and Wyatt’s muscle specimen never made it to the lab in a timely fashion.  So, now we are once again left waiting.  Ironically, back to where we were in April: needing a meeting with Dr. Corvo, to convince her Wyatt needs to go under to get the muscle specimen, and have three neurological tests, namely a Evoke Potentials (EPs), which in turn branches out into three types of tests.  We tried to have Wyatt complete one of the three while awake and let me tell you, not a happy camper.  You try having gunk put in your hair with wires hanging everywhere, with big, clunky ear phones put over your head.  Not comfortable.

Gardening with his big brother.

So, we find ourselves for the most part, enjoying spring with all of the good and bad weather it brings.  Wyatt loves to feel the rain fall onto his  face, and  wear his boots in wet weather.  He loves to go down his slide, and play in the earth of our gardens.  On the really nice days, we can even play in our little pool sometimes, although he seems to be content with throwing things into it.  All in all, he’s a pretty normal 23 month old!  

Except when he puts things in his mouth.  I have a mini-heart-attack. Every. Single. Time.

Don't worry mom, it's non-toxic!

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.

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!

JINXED!

I think we jinxed Wyatt.

As some of you may have gathered, Wyatt was recently in CHEO for pneumonia.  Wyatt has what is called "consolidation" in the lower, left lobe of his lung, and this area often causes us trouble.  Consolidation occurs when there is usually repetitive aspiration of foreign materials, be it, liquid (saliva) or solids - like chicken for instance, and the lungs do not completely heal from the aspiration.

With that said, Wyatt went a whopping 8 weeks without a single admission to CHEO.  This is huge, especially considering the time of the year.  It's winter time, we're hitting digits of -30 outside (although, we would not be going into that weather unless we absolutely have to), and brother and sister are going to school during high peak flu times.   Both Aila and Jude had short bouts of stomach flu and cold viruses, but our little Wyatt kept on going.  Yes, he did have a perpetual runny nose, and yes, he was getting saline masks every morning for almost a month, but hey - it's better than CHEO.  Love CHEO, but it's a hospital.  There are some wicked viruses in that place, and the commute back and forth is exhausting at times (especially when you have to bring in extra blenderized diet on short notice)!

From December, until mid January, our lives were quiet, if you ignore the beeping medical equipment, the screaming toddlers, and the farting dog.  Things are quiet.  Things are good.  And then we said it...and we said it again.

"I think we've hit a record - I think we've gone 7 weeks out of CHEO?!"

"Shhh....stop saying it.  You'll jinx us."

One week later:

"Hey...it's been eight weeks, it's definitely a record."

Eyes roll.

Three days later, we're in CHEO because Wyatt NOSE DIVES (60 minutes) into a raging fever and is struggling to keep his O2 sats above 90%.  We rushed to CHEO, and we're quickly placed in the recess of the emergency room, put on O2, received a chest xray, which confirmed the pneumonia, consequently the IV is inserted for antibiotics and signed the admission papers.  Wyatt is in CHEO for over 5 days, we leave with a Rx for five days of "oral" antibiotics.

I still think it's amazing how far Wyatt has come, especially comparing to how medically fragile he was last year.   The little guy has a good immune system, and with nursing care at home, I am a more stable mom, and am able to clean and cook after Wyatt in the best ways possible.  I am constantly doing laundry, but at least now, I can keep up (sorta).  Some days, I'm making blenderized diet for Wyatt, roasted chicken for supper, and lunches for school.  It's a busy day in the kitchen.  On top of it all,  I make my own gluten and lactose free bread, so on those days, I'm particularly busy.  Our lives, compared to last year, are wholer.  We feel like things are coming together, and our routines are becoming more natural and less mechanical.  We are no longer reacting to the situation, but are preparing for it.  I personally feel like I have more hours in my day, which is nothing short of a miracle.
 
For instance, the other day, I talked to my husband for over an hour. An hour.  It was lovely.  This was in our house, will all three kids.  I'm not going to lie, it involved a tv, but I realized then we really need each other in ways that I think we've almost forgotten.

Being Thankful

It's been a long two months since my last blog update, but in my defense, I've been a busy momma!  Our wonderful nurse, Barbara, switched to nights so I could have a break.  Since she can only a do a set amount of hours, as designated by the Ontario government, I find myself alone during the days taking care of Wyatt.  Gone are the days where I can do the dishes, laundry, sweeping and mopping, and hello to the days of changing one bib after another, signing and suctioning.

Intently watching his sing-along-songs.

So...our house got a little bit messy.

Just a schmidge. Ok, a whole lot. At one point I couldn't open our bathroom door because of the pile of clothes behind it.  I also thought I lost a kid in the mountain of toys in the living room, but thankfully it was one of the older ones; they're really good at fending for themselves!

I titled this blog post "Being Thankful" because - well, paradoxically, a lot of sh*#@y things happened to our family the last two months.  How am I thankful?  I need to start with the beginning, for you to understand the end.

At the beginning of October I found out that our son Jude, was not adapting well to JK.  Even though he had passed the pre-JK program from the summer, Jude was not liking the actual classes of JK, because he realized - they were not going to end after a couple of weeks. Also, he was being bullied by two of his male classmates, and some of the teachers at this particular French school in Ottawa, do not speak a word of English.  Yep. That's right. In the heart of Ottawa. Not a word of English.

I broke down.  My daughter had had bullying problems at the same school the year before, but it was a new experience for both of us, and I thought to myself: this must be a normal 'thing' in school now, you see it everywhere, and at any age! But, this wasn't bullying, (or so I thought), this is Jude shutting down.

My husband held me, and told me what I had been hearing since our daughter came home with her first bout of bullying; we need to transfer them to another school.

Two days later we visited the new school, and Jude started to open up to his father.  He told him that there were two boys in his class who always pushed him into walls, and did this in class and at recess.  He also tried telling the teachers, but they didn't understand him.  I don't care at what age or how 'new' I was to this whole school thing, (for Pete's sake, I taught in MTL for a year, ages 12-18), a student should always be able to tell a teacher, and be UNDERSTOOD, about their feelings, especially when it comes to their own physical and emotional security.  Jude's behaviour leading up to the transfer had also changed significantly, he no longer wanted to cuddle or hug me, and would not look me in the eye.  All he wanted was his dad (which Andrew LOVED).  My way of interpreting the above: mom nurtures me, and dad protects me.

So, that was our first hurdle, and Jude is doing ok at school, although, he's not entirely adapting to the idea of school going beyond the next month.  Aila also had her first friend over, which would have never happened at the other school, since there were no means of communicating with parents.

About two weeks later, and I'll keep this short, I totaled our family van in a car accident that was entirely my fault.  We had the van paid off as of last year, (it took us three years to pay it off at EXTREMELY high payment rates), and I totaled it.  The good news: every one is ok.  We are still driving the rental van, as it has taken our insurance company this long to get a quote to us...we still don't know how much we're getting back...

During these ordeals I've had to deal with my waning health.  I have highs, and I have lows.  With the new medication I'm on, it feels like I have a perpetual flu bug.  Andrew has had to hold me in the early morning hours to keep the chills away.  It hasn't been fun.

Then, *ray of light* we discovered Wyatt was doing so well on his feeds, that he was getting fed 180 mls at a rate of 320, in layman's terms: he's getting fed in a half hour!!!   Which was AWESOME. (Plus an extra 20 ml above his usual feed)!

 Mom thinks: let's feed him more. Let's FATTEN him up!!!

 Dad thinks: let's go to four feeds.  So, you can go to bed earlier than 11 pm.

Andrew convinces me four feeds is better than five, and Wyatt's gaining, albeit slowly, and we need to focus on our end goal: get Wyatt onto four feeds.  Within two weeks of meddling with feeds, Wyatt ends up in CHEO because he was vomiting blood.  Do we think it's from increasing his volume from 180 to 225?  It's hard to say.   We were admitted for 8 days, initially for vomiting blood and dehydration, but in mid-week he had to be put on IV antibiotics because of an ear infection, so that's what kept us there for so long. That, and the fact it has taken him especially long to get to a 2.5 hr feed.  Gone are the days of thirty minute feeds.

CHEO yoga.

We've only been home for a day,  and I know Wyatt is happy.  The little guy cannot talk, but we know, he is happy to be home.  I have a feeling it may be short, as he vomited a little bit of blood on us earlier in the day, so we may be in CHEO by the end of the week.  Thankfully, I have a nurse to help me, because this time last year, I was on my own.  I still remember how STRESSED I was at all times: it was not fun being a mom.  It felt like work being performed by a medically trained person.  Moms are meant to cuddle, nurse(*) and feed.  My job was taken over with suctioning, feeding rates, volumes, and oxygen saturation monitoring.  With all of the bad things that have happened to us, I have perspective now, which allows me to see things in a different light.  I am thankful for the Present Wyatt, because the Past Wyatt scared the living-beejesus out of me on a daily basis.  The Present Wyatt smiles.  The Now Wyatt signs.  MY Wyatt is doing better, even if it's at a very, very slow pace.   He has a character, and those who know him, love him.  I am thankful that he is alive, and we are still a whole family.

Hanging out in the recently renovated fire place.

We're all in such a rush these days, a rush to get our babies into school, rushed to get them to learn things we wouldn't know ourselves until years later, rushed to get things DONE, that if we just took things a little bit more slowly, took our time and appreciated the moment for what it was,  maybe things would end up in a better place in the end.















*I use the term nurse, as in to nurture, breastfeed and tend to.