2017 has been the toughest, and most
emotionally draining year I have ever endured.
Anyone who knows me knows I do
not like to talk about personal feelings. People always tell me I wear my heart
on my sleeve and that you can see right though me. If I’m happy, excited,
proud, uplifted and feeling amazing the whole world sees it. But if I’m on the
other end of that spectrum I try and tuck all those negative feelings down and
store them away inside…. I know I’m not good at hiding that either, but I put
on a smile and I try. The one thing I’ve learned this year is how unhealthy it
is to keep your emotions locked up. I keep hearing how healthy it is to open up
and talk about your feelings so here we go, lets give this shit a try.
I have a friend who I admire more then she will ever know. She has been through
more than one person should ever have to endure in a life time, yet she has publicly
shared her story about losing her family, and the hurdles of medical conditions
she watched her husband overcome. I find so much strength in her being able to
share her story and talk about her grief.
I know there can be healing peace
found within sharing your raw emotions and I hope I can find that. As a bonus if
I can bring some awareness to some of the diseases we have battled and help
anyone along the way by sharing our story then I would be honored to do so.
If we rewind back to January, the year started
off amazing as we had the best 10 day family vacation in Arizona and rang in
the new year watching the Flames game from our condo in Scottsdale. We returned
home excited to get back to our busy life full of hockey, gymnastics, school,
work and all the other excitement our life brings.
However our excitement
quickly faded as Haylen’s neck pain was back and his neck spasms were hitting
him in full force. He was unable to go school some days and we started physiotherapy
and a long road of doctors appointments. At this time he had been having neck
pain for well over a year and it only seemed to be getting worse.
While receiving
physiotherapy treatments for his neck every other day, Farah started to feel
ill. As you know she has had health issues in the past that have given us some
awful scares but those were nothing compared to what lie ahead for her.
On
January 24th, she developed a cough that was bad enough that I took her into
the Lacombe hospital to be checked out. The doctor said she had croup, gave her
a steroid and send her home. As I snuggled in bed with her I knew this was
something more then croup. I called Health link, and the nurse told me to
continue to monitor her breathing. I had been monitoring her breathing like a
hawk for the past 24 hours day and night, as she has been hospitalized before
for respiratory issues when she was younger. As the night went on and I could
see her struggling more and more, I knew I had to take her in to be looked at
again and so began the worst moments of my life.
It was 3:00am, Ryan’s away at work and I need help ASAP. I called our friend in
tears and they quickly came over so I could drive Farah to the ER.
The second I got into the hospital they
immediately called a code and took her to the trauma room. She was pale,
lethargic and struggling to breathe.
I placed her down on the bed and before I
could take off my coat I could no longer see her. There were 6 or 7 nurses and
doctors working on her. Taking vitals, hooking up oxygen masks, starting IVs,
drawing blood and moving a mile a minute. I could do nothing but stand there
and watch with streams of tears rolling down my cheeks as I pray over and over
in my head to help her. I was quickly moved to her side so I could hold her and
try to calm her, as she was beyond terrified herself.
After a short while I learned how ill she
really was.
Her oxygen levels were dangerously low as they
were down to 62. (62/100)
She had subcutaneous emphysema, which caused the skin and tissues around her
lungs and collarbones to be indrawn and sunken in. She had a virus and was
suffering a sever asthma attack.
I remember overhearing the doctor talk on the phone about her and he kept
saying “We need to move her now, she is going to tire out” I had no idea what
that meant or who he was even talking to, I only knew he was talking about her
as he kept referring to the 5 year old female in major distress.
I finally got to speak with the doctor and he told me that she needed to be
moved to the city as the Red Deer Hospital is not set up to help children as
sick as she is. He let me know that the PICU Transport team would be sent down
from the Stollery to pick her up. They tried to airlift her but it was too
foggy to fly so an ambulance had to be sent down for transport. She could not be sent in an ambulance from
Red Deer, as it was crucial that a pediatric doctor and nurse travel with her
so they could continue to treat her and work on her.
My heart sank and the tears were flowing more
then ever as the doctor continued to explain what he meant by saying “she is
going to tire out” … as she was working so hard to breath they feared they
would have to intubate her. A medical provider was to be beside her at all
times ready to put a tube down her throat and hook her up to a machine to
breath for her if she were to stop breathing on her own.
I was in panic mode, scared and a complete
mess, the nurse took me aside and said “I know you’re scared but so is she and
right now we need to try and calm her, so talk to her about anything, home,
school, friends, animals, anything at all.” …..I talked and talked but the only
thing that seemed to calm her was when I talked about our trip to Arizona or
mentioned her teachers.
We ended up talking a lot of her going back to
school and seeing her teachers and it calmed her so much while we were waiting
for more help.
Farah had 4 teachers at Little Stars that I will never forget.
Four ladies that helped my daughter in that moment and mean more to me they will
ever know.
It seemed like forever but Farah’s ambulance
showed up and we started the journey to Edmonton. I have so much appreciation
and respect for our first responders, doctors and nurses. The level of calmness
they can maintain while in a stressful situation is admirable.
Ryan immediately jumped on a plane and headed
for Edmonton to meet us at the hospital.
During the drive Farah continued to receive Ventolin through a nebulizer every
5 minutes along with high flow oxygen through a mask.
Once she got to the hospital she was taken to
the Intensive Care Unit and passed off to another team of amazing doctors and
nurses.
Over time she was able to drop her Ventolin from every 5 minutes, to every 10
to 15 to 30 and so on. As the fear of intubation remained high she spent the
next few days being monitored 24 hours by a specialized nurse. She remained on
the high flow oxygen but was able to move from a mask to nasal prongs, she had
2 different antibiotic’s being administered through 2 IV’s in both her hands.
She was being treated for a severe asthma exacerbation and a virus.
We had so many ups and downs as we watched her
monitors every second.
She was fighting. Hard. And she was beginning
to win.
After 2 days she was finally able to be moved
out of Intensive care and placed into a room on the Pediatric Unit.
She got
stronger and stronger with each day and after a total of 5 long days at the
Stollery she had her oxygen prongs taken off and we prayed hard that she could
hold her oxygen levels on her own so we could take our baby girl home.
When she was released she was back to our
happy smiling girl and we couldn’t be more proud of the strength she had shown
us.
She continued to have follow up appointments
with many different specialist but she spend the next 2 months doing cart
wheels and handstands, and running around the arena like nothing had ever
happened.
Up until the end of March. We were in
Lethbridge for a hockey tournament and she told me she had a sore throat. She
then developed a fever but we kept giving her Tylenol, Advil and her inhalers
to try and stay on top of her breathing issues….
Once we got back home from the weekend, her
inhalers no longer seemed to be helping so I took her back to the ER….. Again
they immediately took her in and started her on Oxygen and ran an asthma
protocol.
They took x-rays and determined there that she had pneumonia, so she
was admitted into the Pediatric unit at the Red Deer Hospital.
Ryan was home so
he was able to stay with us in her room, but it was the end of his days off and
he had to go back to work. Farah seemed to be getting better, she remained on
oxygen and IVs but I said to Ryan, she is doing good, she’s in the right place,
we will be fine, go to work and I will let you know what is going on. His work
was amazing in giving him the time off to be with us in Edmonton the whole time
in January, but being he had missed so much work we decided he would go since I
figured Farah would be home in a day or two.
But I was wrong.
Painfully wrong.
Two Days into her stay in the Red Deer
Hospital, while hooked up to oxygen, IV’s and all medications, she took a turn
for the worse and went back into major respiratory distress.
The doctors were once again at a loss of what
was happening and how to treat her.
I felt my heart once again shatter into a
million pieces as I heard the words “She is going to tire out” come out of the doctor’s
mouth.
I prepared for the worst, not knowing what was
going to happen....
She was already in the hospital, and they are
already helping her, doing all they can, yet she is getting worse and nobody
knows why.
The fear of intubation was higher then ever so
they made the call to the PICU transport team and before I knew it we were back
in an ambulance being rushed back to the intensive care in Edmonton.
We are
once again left watching every single number on her machines go up and down,
praying our daughter can gain her strength so that we don’t have to watch a
machine breath for her.
When she got to the Stollery they were very
unsure of what they were dealing with, as none of her symptoms were adding
together to make their typical diagnosis but they remained to treat her for an
asthma attack and pneumonia.
Ryan flew back from work and stayed by her
side in the PICU.
We were heartbroken.
Here is our little girl that has fought so
hard but remains back in this hospital bed in the intensive care hooked up to
more wires and machines than I ever want to see.
The days that followed were tough, but Farah once again showed us how strong
she was. Two days later she no longer needed 24 hour monitoring by the PICU
Nurses, so she was again moved up to the Pediatric Unit. This time we had our
own private room.
What a blessing that is.
I was asked the same questions over and over by many different doctors. It was
beyond overwhelming. Farah had major anxiety and didn’t want anyone to touch
her.
Even though she was out of the Intensive Care she was still very
lethargic, and weak.
We had not seen her smile in 5 days and she didn’t have
to strength to put together more then 2 words at a time.
Every moment we shared in that hospital room was like reliving her life.
Finally seeing her stand on her own was a huge accomplishment.
My heart leapt
for joy when my 4 year old took a few steps again on her own.
Slowly the wires starting coming off her
little body, the IV’s came out and the new prayer was for her to be able to
breath without oxygen.
After 10 days in the hospital she was able to
breath unassisted and hold her oxygen levels enough to go home!!!
I thought that was end, and I was going to smile again. My baby was home and
getting better each day. But I was more overwhelmed then ever.
Every thought, every fear, and every single emotion I had bottled up came
raging out. I stayed so strong while she
was in the hospital. I fought so hard along side her and never had a chance to
process it all until we were home.
I cried and cried and cried and eventually I
started to heal.
Though those 2 months and in the months
following we traveled back and forth between Calgary, Red Deer and Edmonton for
doctors appointments for both Farah and Haylen.
We have seen Pulmonologists, Immunologists,
allergists, ENTs, Rheumatologists, Neuro-Surgeons, Pediatricians had MRIs,
X-Rays and had multiple trips to the lab to have blood taken.
While at the immunologists with Farah we discovered that our little 5 year old
girl has had blood taken 20 different times.
Oh that thought hurts my heart, it is no wonder she is scared of needles.
But the biggest kicker is although we have traveled and seen so many specialist
our response to our daughter health remains one big question mark, that nobody
knows the answer to.
Why does she become so ill? Can we prevent
another attack? … Nobody knows the answer and it is beyond frustrating.
Farah is home, our girl is thriving and we are ready to move on and enjoy life.
But April comes and Haylen’s issues worsened.
As I mentioned previously he had been having neck pain for over a year, He has
seen many different doctors, had different physical assessments, treatment of
phyiso-therapy, chiropractic treatments, or massages that are not fixing the
issue. X-rays are been taken but they are not showing anything even though the
pain continues to be present so an MRI was ordered to further investigate.
We took Haylen to the Children’s Hospital to get the MRI done on his neck, the
following day we got a call saying he needs to come back a.s.a.p. to get more
images taken with a dye injection to see things more clearly, so back to
Calgary we went for another MRI. Friday
we got the results that he has swelling in is neck between C1 and C2 so he was
sent for specialized blood work with a referral to see a Rheumatologist back in
Calgary…..
That week following our 2 trips to Calgary for
Haylen’s MRI’s, Farah had 3 1/2 hours
worth of testing in Edmonton at the Stollery.She had the Sweat Chloride Test to rule out
Cystic Fibrosis....
that test came back negative. Thank God! She had x-rays to compare a picture of her now
healthy lungs to the images taken in the PICU... her lungs are now clear and
perfect. She had a breathing test to diagnose asthma...
those tests are incomplete as the kids generally have to be 5 in order to do
them right... they said she did amazing and got good results but they are not
fully conclusive to make a diagnosis... even though she has been treated for 2
severe Asthma Exacerbation in a two and a half month span the answer to the
question "does she have asthma?" Still remains unclear. Her Pulmologist is still very uncertain what
is going on and we got no answers of why she was so ill twice in such a short time span, but we did rule out a
few things that he was concerned of and that is a good thing...
To see the X-rays of her lungs be so clear is
a HUGE relief as they were so uncertain of what they were dealing with during
her hospital stay in March. They didn't know if it was pneumonia or a
particular lung collapse or something else. I tried not too worry to much but
my mind kept wondering, so it was a huge sigh of relief to see her lungs so
clear. Even though we didn't get any clear answers or
ways to prevent another attack, we were ruling out things and we took that as a
step forward.
We remain trying to keep life for the kids as
normal and routine as possible in between all the chaos.
Haylen has been a
champ through all of this. I was scared to let him come to the hospital to see
his sister as I didn’t want him to have to see her with IV’s and Oxygen and
tubes and wires, but they missed each other so much. He knew where she was and
we knew he was worried about her so we let him come and sit with her in the hospital
and I know that helped them both.
He has seen things I never wish any kid would
see but with his big heart he has said he wants to work harder to reach his
goals for his Ice-Cream shop so he can keep helping sick kids!
Despite our efforts to keep life normal, we began seeing some big changes in
our son.
His behavior was different.
Very different.
He is normally a very calm kid that doesn’t get too upset, but he began having these
random outbursts that were unlike anything I had ever seen.
I didn’t know how to handle him.
I felt like the worst mother in the world.
I thought, seriously what mother doesn’t know how to handle her own son?
I made multiple calls to Ryan at work and he would sit and chat with Haylen to
calm him down. Ryan quickly became Haylen’s rock and he was always there when
he was needed.
The more Ryan and I talked about it and did a little research we realized we
were dealing with Childhood anxiety.
Now this is also the part where I need to
apologize for my misunderstanding on this awful disease.
I was one who simply thought, ‘get over it, count your blessings and move on’….
Or simply ‘control your child and teach them how to be a respectable human’……
I was uneducated and 100% wrong.
Anxiety isn’t a choice. It isn’t a behavioral
issue.
It is an awful overpowering feeling that you
have no control over. After spending months reading on how to deal with a child
with anxiety and learning more and more about this disease I was able to talk
to Haylen and figure out what was going on.
This poor kid didn’t know how to deal with everything going on around him.
We talked and talked and he shared with me his
constant thoughts.
His two constant heartbreaking thoughts,
1. That the pain he was feeling in his neck was never going to stop
2. That he was going to lose his sister.
Things a child should NEVER have to worry about.
He is so much like me and he kept everything
bottled up inside and when there was too much to handle he exploded.
He didn’t want to sleep because he was scared
he would wake up to us being gone and his sister would be back in the hospital.
But when he was awake he was in so much pain.
I learned right then how important it was to communicate and share your
feelings.
Haylen and I have always had a strong bond. I think that is why I took it so
hard when he would have these outbursts around me. Daddy became his calming
rock, but that was because he understood him more. As I learnt more about
anxiety and the overwhelming fears that was crippling our son, I was then able
to help him. Help him not be so scared, help him manage his pain, and let him
know how important it was to talk to me and share his feelings.
He no longer is suffering from anxiety and we have our amazing bond back.
Haylen has always been my rock. No matter what that kid gives me strength and
he teaches me something new all the time.
June came along and we met with a neurosurgeon for Haylen. He had to assess him
to be sure that the swelling was not affecting his spinal column or compressing
any nerves. What a relief it was to get an all clear from that department.
Later on in June Haylen had a scheduled surgery to have his tonsils and adenoids
removed as testing earlier in the year showed he had large adenoids and he had
sleep apnea as they were obstructing his nasal passage.
Being Haylen is one tough kid I didn’t worry too much about this surgery. He
wasn’t scared, so why should I be.
They prepped him for surgery and I watched the nurse roll Haylen off as he
handed out his business cards to all the doctors and nurses they passed on the
way to the OR.
I grabbed a coffee, a bite to eat and hurried back to wait in his room. Being
in the hospital and seeing the ambulances come and go was not a good feeling
for me so I headed back to his room to hide out while I waiting for him to come
back.
I heard these awful screams and terrible crying coming down the hall and I
tried to ignore them, although they got closer and closer. I soon realized that
was my son making all that awful noise.
We discovered that Haylen is very sensitive to
anesthetic.
He woke up from his surgery in complete disarray.
He was crying, trying to get up, ripped out
his IV and wanted to get out of there. He was so delusional and they couldn’t
calm him so they thought they would bring him up to mom to see if I could help.
He didn’t know where he was, and was a complete mess. He was swinging at everyone
who tried to help him. He kept trying to run away even though he could barely
walk. He ended up locking himself in the bathroom and tried to change all his
clothes. I had all the nurses leave and I was able to open the door and hold
him. I was able to calm him enough to get him into his bed, but then he started
hyperventilating.
At this time the nurses didn’t know if he had ripped his
breathing tubes out when he took his IV’s out so they were scared he opened up
his wounds and caused trauma in his airways. They put him on oxygen and had a
respitory therapist come to monitor him. As the oxygen helped to clear the
anesthetic his breathing leveled out and he fell asleep in my arms.
He had a good 2 hour sleep and we learned that his breathing tube was safely
removed by a doctor before he woke up in the recovery so he did not damage his
airways.
When he woke up he had no recollection of
anything that had happen previously.
He enjoyed multiple popsicles, ice cream and lots of movies.
He left the hospital with $90 in donations from his nurses for the Ronald McDonald
House and an offer to come back and sell his ice cream at the hospital’s next
event.
The next few months were amazing.
We spent the summer camping in the bush at our favorite spots and we had daddy
home for a whole month! This was one of my favorite summers and it was just
what our family needed.
Time together, away from the chaos to just
enjoy each other.
Haylen worked hard selling ice-cream and he
surpassed his goal of raising $7,018 for the Ronald McDonald House when he was
named one of Canada’s Outstanding Canadians by Shaw and received a grant to be
donated to the Charity of his Choice. He was chosen to be 1 of the 50
Outstanding Canadians and furthermore went on to be named one of the 3
Canadians to receive an additional grant for the RMH. We are beyond proud of
his accomplishments and look forward to watching him further succeed.
As summer came to an end we made the decision to jump ship and enroll the kids
in St. Gregory Catholic school. This has been one of the best changes we could
have made for the kids. We love the school and adore all the teachers there!
September 6th Farah had surgery to
remove her adenoids and took it like a champ! This surgery was a shot in the
dark. The surgeon and Pediatricians hope was if they removed the adenoids and
cleared up her nasal passage maybe it would help alleviate some of the
complications in her lungs. They didn’t make any promises that anything would
change, but it’s been the only hope that we have been given so we took it so we
can say we have tried everything we can for her.
As Haylen’s pains continued into September we remaining traveling between Red
Deer and Calgary to try and get some answers as to why our almost 8 year old is
in constant, never ending, pain.
On September 15 the kids and I headed to Calgary to meet with the
Rheumatologist. I walked in expecting the consistent phrase we have heard so
many times this past year of “we don’t
know what’s going on, but we will do more testing to find out.”
Being
so unprepared brought so much pain. I sat there fighting back the tears as I
felt the weight of the world once again land on my shoulders. My heart crumbled
back into pieces as the doctor told me our son has Juvenile Rheumatoid
Arthritis in his neck. She went on to explain how upon assessment she suspects
it may be in his Jaw and both his knees as well.
As
we sat in this little hospital room I didn’t want the kids to know how
devastated I was, so I fought hard and held it together while the doctor went
on to explain all the medications he will have to be on along with symptoms and
side effects that come along with the medications.
This diagnosis has taken me months to process….
What do you mean my 8 year old has arthritis, isn’t this a disease only old people
get?
I
dove into the books to research as much as I could and I’m so thankful for
those who have shared their stories dealing with this disease and the
medications associated with it as it has been a saving grace to be able to read
stories of other kids and speak with other parents on the same emotional roller
coaster.
Haylen started treatment which includes taking Naproxen and
Methotrexate. These medications are anti-inflammatory drugs that will hopefully
help maintain the swelling and reduce the pain. One mediation is a disease
modifying drug which takes 6 months to see results but the hope of it is to
keep the swelling under control. Being the inflammation is in his neck it is
crucial that we monitor and control this to prevent bone deformation from
happening. If his bones begin to rub together paralysis may happen.
When he started the medications, we had been warned that they
can be harsh on his stomach so we did not know what to expect.
Haylen
has an extremely high pain tolerance so he may not ever say anything at school,
in class or at hockey but we have been told that the best thing we can do is to
educate his teachers and coaches on this disease and teach them what to do when
he is having a flare. The other thing we have learned is that he has good days
and bad days. Haylen has learned to speak up and tell us or anyone if he is
having pain that day and if he is, he is not to participate in any activities.
Being he is an active little boy that loves to play
hockey we don’t want to take his passion away. This may be a challenge but
together with the coaches and teachers he has I know we can do what
is best for him.
We just need to have open communication with him and know there
may be days he will have to be benched or days he won’t be able to go to
school.
We were told to educate teachers and coaches not to push him and to listen to
what he has to say. If he says he is tired or sore he has to stop.
This has been a tough concept for me to take in. There has been a few
times Haylen has had to remove himself from the ice, the first time I sat in
the stands fighting back the tears hoping nobody would notice. As time has gone
on we both know how to handle the pains at practice or games. There has been
times he has had to watch practice from the stands but together we agreed he
will always be there to cheer his team on! Encouragement has a strong power and
that’s one thing that goes both ways.
We hope that
if you see him sitting on the bench or in the stands while the rest of his team
is on the ice that you encourage him stay strong and keep working hard. Let him
know it’s okay and that uplifting support surrounds him.
Being these medications are disease modifying Haylen has
a standing order to have blood work done every 3 months to monitor his levels.
He also is more susceptible to illness and if he gets a fever, cold or flu he
must been seen by a doctor ASAP.
He has now been on his medications for almost 3 months and he is doing amazing!
I am stunned by the changes in him.
He no longer lives every day in pain.
As
mentioned he has his good and bad days but the constant every day aches are not
there and that is such a blessing.
We have been a pretty open book with what we have
gone through with Farah but we haven’t told too many people about Haylen’s
issues as it took a long while to process it all. However I am so thrilled to say we have our
happy, amazing helpful boy back. He is thriving, always working hard to help
other kids and anyone he can.
I am still processing but healing. I am always open to new suggestions on ways
to help our kids.
To look at both our kids now you would never know the hardships
they have faced this year, but when I think back to a few months ago as I
watched my daughter fight for her life in the intensive care the one thing I beg of
everyone is please please please keep your sick kids home. A cough to one kid
may just be that….a cough, but to both my kids a cough can turn into a battle
no parents ever want to face.
The one amazing thing both my kids have taught me this past year is that no
matter what they were dealing with they still always wanted to help someone
else out. Haylen battled though his pain to reach his goals.
He never quit and Farah never quit. They fought and they
won!
… see being competitive can be a good thing ;) lol
The heartaches we have endured this year have been such learning experiences. I
could easily say this year sucked and it was the worst,
but I refuse to.
It’s
been hard but it has taught us how tough we each are.
It taught us how important it is to have open communication and how toxic
keeping our emotions bottled up inside can be.
We also learned the power of a hug. Growing up I was never a hugger, but now i'm the crazy lady that hugs everyone all the time!! I will
never forget the strength a hug from someone I barely knew gave me while we
awaited the transport team in the hospital.
You never know the battle someone
is facing and a simple hug can provide the strength to keep fighting.
Knowing
someone cares is overwhelming.
Most importantly this year has taught us how much we need each other. We learnt the importance of leaning on our
friends and those around us.
We couldn’t have gotten though this year without encouraging support and help of our friends and family.
We also reconfirmed what we already knew….Family really
is everything.