Our First Adventure to Boston!

Finally I am taking the time to sit and go through our first trip to Boston, bear with me this might be quite long.  On June 1st we flew out to Boston to have Mason evaluated at Boston Children's Hospital.  The kids were so great on the flight there and we got greeted by only the best when we got off the plane in Boston. We got to stay the night at my cousin's who has two cute little boys similar to Ryder and Mason's ages and it was so fun seeing how they played like they have all known each other forever when that was basically the first time they had ever met. 4 little Johnson boys under one roof made for a crazy household but also some amazing memories.  The next day we checked into our apartment a few blocks away from the hospital.  We were are the 18th floor, it was pretty crazy but had a great view of the city and the ocean in the distance.  The next day was a Monday and Mason had pre op all day that day.  When you go to cardiac pre op they check the child in then send you on what feels like a scavenger hunt when you aren't familiar with the hospital.  They send you to xray then you come back and check back in, then to labs, then you check back in again, then to echo, then you guessed it you check back in.... this goes on until you have completed the list of things that need to be done before the procedure or surgery.  That day went really well and we got to meet Mason's cardiologist who we absolutely LOVE!  At the end of the day they told us to have him back early that next morning for his Cardiac Cath and MRI.  Mason was so cute with everyone and like always everyone fell in love with him instantly.  He was super tolerant to everything they wanted him to do.  Once he fell asleep they took him back and took us to the waiting room.  We got updated every hour and finally after around 7 hours he was done and in recovery.  They had to coil a bunch of collaterals in his heart so he needed to stay over night on the step down unit.  The night was pretty horrible to say the least, he hated being there and he didn't understand why he couldn't move around.  The next morning the surgeon came in to talk to us.  It really wasn't the news we were hoping for.  In a nut shell Mason was a candidate for the Staged Left Ventricle Recruitment(SLVR) but not a great one.  He also was a candidate for the Fontan, but not a great one either. So really he wasn't a good candidate for either of the options that were available to his heart defects.  The surgeon kept staying how sick his heart was and he had never done the SLVR on a heart like his.  He also said he had a feeling that it would be a good choice for Mason but that is all he had to go off of was a "feeling".  He had no data to back up how things would go.  With the Fontan he knew things would go great at first but he was sure Mason would be an early post Fontan transplant and with his anatomy he said Mason would be at a higher risk for PLE which would be life threatening.  It was our decision, I felt as if I were being told to choose the lesser of both evils. I cried, ALOT.  It was terrible.  We asked for prayers, we prayed and everyone felt the SLVR was the route to go, except me.  I still wasn't sold on it yet.  I asked his Boston cardiologist to consult with her colleagues and the other surgeon.  I talked to Mason's cardiologist at Primary Children's, at the end of the day half the doctors in Boston said SLVR and half said Fontan.  His Primary Children's doctor said there was pros and cons to both but he would be more inclined to say Fontan because it is what he was familiar with.  I was left with nothing.  All our families and Zac still said SLVR.  The only thing I could think was I didn't come to Boston to not go home without Mason.  I was lost.  We decided the day before surgery, which was still up in the air, to take a fun day out with the cousins and explore Boston a little and go on a thing called the Duck Boats.  While we were waiting to get on Mason's cardiologist called seeing if we had decided anything yet.  At that point I just blurted out, we decided with the SLVR.  I shocked myself a little but it felt right, all the sudden I knew it was going to be okay.  We enjoyed the rest of the day and had a blast then went back to our apartment to enjoy some quiet family time before surgery the next day.  We didn't have to be at the hospital until the afternoon.  Mason hadn't wanted to eat or drink much the few days before but he woke up with an appetite.  My mom tried her hardest to help me distract him but he only had one thing on his mind and that was food or drink.  He even asked for milk which he doesn't even like, he was a miserable little boy and didn't understand why we wouldn't feed him or give him a drink of water.  When we got him to the hospital he wouldn't talk.  He just laid on me and kept his eyes closed.  They gave him a shot to fall asleep before they took him out of my arms.  That was one of the hardest times I have ever had to hand him over.  Surgery was long but went very good which was a relief.  Then we just had to wait to go back to see him in the Cardiac Intensive Care Unit(CICU).  He was intubated and they had him medically paralyzed but he really looked good, considering.  They told us to plan on him having a breathing tube for a week, well Super Mason was able to have it taken out 24 hours after surgery, that was such great progress for him! The next day after he got extubated was a little rocky.  He ended up needing a blood transfusion but nothing to complain about and it made him feel and look better.  Three days after surgery he was moved to the step down unit.  He kept doing great and was able to be discharged one week after surgery.  A great thing was on his discharge echo, his left ventricle had grown and it was pumping! I really am regretting not blogging while we were there because the days after seem somewhat of a blur.  We did some sight seeing and spent family time with our family that lives in Boston.  It was such a great experience.  From seeing all the historical sights, to the beach, to a Red Sox game, we were in love with Boston.  Mason got the go ahead to fly home a week after surgery so after a little over 3 weeks in Boston we were on our way back to Utah.  Everything has been going great since we got home.  We have a great summer making lots of fun memories.  Now it is time to get ready to head back for the big surgery.  We fly out in less than 4 weeks and everyday my anxiety goes up a little.  Sometimes I wish I could pause time, but I can't.  So we prepare to go.  Mason is excited to go.  He is funny, he is okay with being "cut open" but he is not okay with the idea of having a "pokie".  Both boys are excited to be back with family too.  I am nervous for the airplane germs.  We have officially gone into lockdown mode with Mason at our house and hope to keep him away from the sickness going around.  I am also already a mess thinking about Zac and Ryder only staying in Boston a very short time with us, I am so involved with everything Ryder does so I already feel torn and it hasn't even happened yet.  But it is only temporary.  I am glad my mom will be able to be with me most if not the whole time and Zac's parents will be there for Mason's surgery.  For real it is my goal to update his blog with everything in Boston.  Every time I blog I love it so I am not sure why I don't do it more often.  I will look at it as my New Year's resolution.  We hope you all have a good Christmas!! Happy Holidays!

The Boys listening to their music in the airport and on the plane.

 



Our amazing view from our apartment.

Harvard Medical Campus

 



Boston Children's Hospital

 



Silly boys sight seeing

Dinner at TGIF

Right before Mason's Cath and MRI

 



Fenway Park

 



The Johnson Boys

 



Right after he was extubated



Mason's First walk, it was hard work!

Brothers!

Spidey

 



Granary Cemetery

Resting place of Sam Adams, Paul Reviver, John Hancock, Mother Goose, Benjamin Franklins Family and Many more!



Fun at Castle Island

Korean War Memorial for my Grandpa Barnson

 



First Post op appointment.  We love this lady!

Red Sox game with great seats!

Boston Marathon Memorial

 



Park Rangers

 



Build a Bear

 



The Worlds Only Curious George Store

 



Harvard

 



 

On the way home.  One sleepy boy and one future pilot

 



 

 

The Week That Changed Our Lives

Yes I realize I have not updated since I said we were going to Boston. We did go to Boston and Mason did have an open heart surgery while we were there. I updated his FB page with small updates while we were there but haven't really gone into detail about our experience. He has to go back in January for another open heart surgery and FINGERS CROSSED it will be his last surgery and he will be able to live life without worrying about surgeries. I will update with all that and pictures from our trip another day. Today and this week is all about the start of this crazy rollercoaster we have been on the past three years. I want to start it out with two of my most favorite heart mom poems written by Stephanie Husted. The first one I relied a lot on the first year, the second one just seems so relevant with  my "auto pilot" "I'm just fine" ways:

I am a Heart Mother

One day my world came crashing down,
I'll never be the same...
They told me that my child was sick..
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong..
It seemed my heart was breaking..
As, I'd loved him for so long.
I will not give up on this child..
despite your best "advice"..
I will give my child a chance..
No matter what the price..
And I will learn all that I need..
to help my child to thrive...
I'll even use that feeding tube..
My child will survive!
And he'll needs lots of therapy?
And he just can't gain weight?
Alright God I can do this..
I will not curse our fate.
The feeding pump beeps,( at 3:00 a.m.)
It serves as my reminder..
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings..
and I run to my sleeping child's bed..
I watch him then, for quite awhile..
(I bend down and kiss his head)
Then I cry for the parent's whose lives have been broken..
And I look to You wondering why?
Oh Lord, I just can't know your ways..
No matter how I try.
And yet, I trust You hold his life..
(and guide us through each day)
My mind says savor each moment he's here...
But my heart whispers,"Please let him stay".
From... pacing the surgical waiting room...
to sitting by his hospital bed...
From... wishing for a good nights sleep..
to learning every med..
From... wondering will he be alright?
to watching him reach out his hands..
with every smile, my heart just melts..
(despite life's harsh demands)
For all who see that faded line..
I look to them and smile..
You see my child is loved so much..
I would face any trial...
That same scar I trace with my finger..
(It's the door to his beautiful heart)
You must have known how much I'd love him..
(Just as You loved him right from the start)
A heart mom is always a heart mom..
(wise beyond all of her years)
And for those who have angels in heaven..
Our hearts share in all of your tears..
On Mother's Day I will remember..
You chose me for him(and no other)
And I will embrace that beautiful day..
When I became a "heart mother".

Heart Mom Lessons

Heart mom lesson number ten...
Forget who you were and who you have been
Life is about to take a detour
And you will be shaken to your very core.
You've just found out something's not right
How will you make it through this plight?
What can you do? What should you expect?
Of life with a child with a heart defect?
Heart mom lesson number nine
You'll learn to say things are just fine
When people stop... to just say hi
There will be days...you long to cry
Bound by worry...fear... and stress
At times...you'll think..."I am a mess."
You'll smile, when you long to whine
Then say..."thank you"...were doing fine.
Heart mom lesson number eight
You'll learn just what it means to wait.
Patience is a virtue right?
Who really needs to sleep at night?
A hospital room... not a permanent state
As each day passes... home must wait.
Patience is knowing...things won't stay the same
Patience is accepting...a changing time frame.
Heart mom lesson seven here
Our children's futures still aren't clear
Innovations continue to thrive
Each year more children will survive.
These children and their familiies
Will rise to fight these CHD's
Research is imperative
Our kid's deserve a chance...to live.
Heart mom lesson number six.
It's clear life holds no easy fix
If life were perfect...in every way
I guess...I'd have no need to pray
I'd still be living...blind...and dim
Forgetting I must lean on HIM..
I cannot change the way things are
But prayer makes God...seem not so far.
Heart mom lesson number five
Cherish this day...your child's alive
Today we frolicked in the snow
(Did he like it? hmmm...well...no)
I watched him smile..as snowflakes fell
I thought...thank God...he's doing well
A bundled boy...warm hat...one glove
No doubt about it...this is love.
Heart mom lesson number four
There is always time for more
More messes that need cleaning up
More cartoons on t.v
More yes...I'm gonna tickle you
(The best things remain free)
More bubbles in the bathtub
More stories...one more song
More this little piggie went to market.
One more...just can't be wrong.
Heart mom lesson number three
Their special hearts...help us to see
Did I always understand?
That God holds our lives in his hand?
Before my child...I took for granted
The gifts in my life...that God surely planted
Before my eyes...I missed them...how?
My heart child came...I see them now.
Lesson number two...take heart.
It is okay...to fall apart... It's not easy,we don't know
Will we watch our children grow?
God looks to his angels...saying see why I chose her
She is not afraid to lose her composure
In her heart...she feels defiled
But nothing will stop her... from loving her child.
Heart mom lesson...number one
It must be said...we're never done!
That day...will never come you see
We'll always face uncertainty
But I will face each day unknown
Taking heart...I'm not alone.
These lessons... remind me to cope
Stand strong...believe...and always hope.

3 years ago today we found out our baby boy was very sick.  We were having a lazy day, I mean what new mom doesn't just want to chill in sweats and watch TV with her kids?  We needed a new computer so I decided that before naptime I would take the boys and we would go to Staples to look at a computer I saw in their ad.  While I was getting Mason out of his bouncer to put him in his car seat he stopped breathing.  I have no idea what went through my mind but all I remember is turning him on his stomach and doing back blows then turning him over and rubbing his sternum.  He started breathing but didn't look okay.  Don't ask me why I didn't call 911.  I called the pediatricians office and told them what happened, the nurse kind of blew me off, told me there wasn't an appointment until that night and if I was really that worried to take him to Instacare.  So I put both boys in the car and drove to the ER.  When I told them what happened they looked at him in his car seat and I don't think really take me very seriously either, that is until they put the oxygen sensor on his fluid filled foot and his oxygen was in the 70's, he looked pink.  His body was completely modeled and he was so so puffy.  I just thought he was getting chunky. Zac rushed to the hospital from work.  They put him on oxygen and started with blood draws to check for infection, nothing.  So then they decided to do a spinal tap.  The day went on like this, test after test.  Finally the ped on call came up to the ER and ordered a chest xray.  That is when everything started to change.  He told us he was going to admit Mason to the ped's floor where he would run some more tests and consult with Primary Children's.  At that point it he said Mason's heart was very big and he had some pleural effusions.  Then came the echo.  I don't think the echo tech was out of the room 5 mins when the doctor came in saying Life Flight was on it's way to take Mason to Salt Lake to Primary Children's.  At that point we still thought pleural effusions was what was sending him. It was almost 10pm at that point.  I don't remember much after that.  When we got to Salt Lake all we were told was that he was sick and he had a few Congenital Heart Defects and told us a few of them.  They had some more testing scheduled for that next day.  The next day they did a Cardiac MRI that they had to intubate him for due to a picture they had to get.  They gave him med to stop his heart for a split second to get a picture they needed.  We waited in the waiting room.  Then came the cardiologist.  She took us into a private room and our world was flipped.  She said, Mason is very sick.  He has a heart defect called Hypoplastic Left Heart Syndrome.  That didn't mean anything to me at that point.  She proceeded to tell us that it was the worst of the heart defects and that if he was born a decade sooner the only option we would have would be to take him home where he would pass away.  I only remember pieces after that.... stuff like "you have the option to take him home and put him on hospice to keep him comfortable before he passes."  "he is in heart failure, I am shocked the rest of his body hasn't shut down"  "Surgery is an option, it is a rough road and not promising if you choose to go that route" "Transplant is an option but he probably wouldn't make it long enough to receive a new heart".  The conversation was ended with us choosing to try the surgery to save him.  The next day was a blur, we met with social workers, surgeons, anesthesiologists, different hospital teams.  Signed a bunch of consents, talked to research/study teams, it was never ending.  On October 29th he had his first open heart surgery.  When signing the consent with his surgeon, Mason was given a next to nothing chance of making it through the surgery.  His nurse cried with us as we walked him to the OR doors, she was one of the first to fall in love with this amazing boy.   Surgery went better than expected and his recovery was smooth and better than anyone ever imagined.  The rest is basically history! He has exceeded every ones expectations with how great he has done.  We are defiantly blessed and have a lot of angels helping him and us out every step of the way.  I have no doubt about that at all.   This new way of life we were put into is always teaching us something.  It can be mean, ugly, unfair, nauseating, frustrating, joyful, amazing, and beautiful.  It is something that has brought our family closer together and is reminding us constantly about what is important in life.  So today, the day I will never forget, we celebrate.  We celebrate our family being together, the friends we have made, the love we have felt, the prayers that were said, the support that we have, we celebrate it and remember it all.  Today is a good day.

We are heading to Boston!

Well it is time that I start updating here alot more often especailly where some of you don't have Facebook for me to keep you updated there! Where to start...... WE ARE GOING TO BOSTON, and not for a vacation, or to move there.  When looking up the top rated pediatric cardiology units in the United States I came across Boston Children's Hospital and they were in the top because of a surgery they were doing for kids with Hypoplastic Left Heart Syndrome kids.  It is called the BiVent or Staged Left Ventricle Recruitment.  After reading about it I found some moms of kids that had gone the procedure, told Zac about it and we decided it felt perfect for Mason so after sending his records to Boston and talking to his cardiologist we knew it was perfect if he was a candidate for it.  Boston got back to us and told us he was an ideal candidate for it! The surgeon called himself to talk to me about it and answer any questions that I have.  He made us feel even more at ease with it.  His surgeon is Dr. Emani.  Then Mason was assigned a cardiologist over there and she has called and emailed and talked to us a bunch, her name is Dr. Banka and also makes us feel so comfortable with everything.  They have given us their emails and told us to email them anytime we have a question.  I have and they both get back to me within 6 hours! Pretty dang amazing if you ask me, you can tell they are all about their patients and families and making them feel comfortable!  I am having some nervousness just for surgery itself and the fact that a surgery came faster than I was expecting but it still feels so right.  We have to fly to Boston in the first of June for some preop appointments and for some procedures before surgery, then his actual surgery will be on June 7th.  It is coming up so so fast!  We feel so blessed where his heart adventure has led us to and can't wait to better his life. Here are a few links to the surgery that he will be having

http://childrenshospital.org/newsroom/Site1339/mainpageS1339P917.html

http://vectorblog.org/2012/11/building-a-whole-heart-for-children-born-with-half/

I will update the blog alot more often now to keep you in the loop.  We are doing some fundraising for expences that this is going to bring.  His insurance will cover the surgery so that is a big relief.  Another HUGE weight lifted off our shoulders is that we have some family that lives near Boston and has offered for us to stay at her house which saves us alot of money on a place to stay(Thanks again so much Marge,  I don't think I will every be able to express how thankful we are for you and opening your home to us).  So what we are having to raise money for is airfare for our family, our bills while we are gone(they told us to plan on 6-8weeks) because obviously we will be too far from home to go to work, and food.   On the right corner of his blog is a donation button.  You can donate to Mason's account by clicking on that.  We are also selling super cute Team Mason shirts, the picture of them is below, to raise money.  They are 12.00 a shirt you can pay through the pay pal donation button on here and if you want it shipped just add 5.00 per order.  We are so grateful for the amount of support we continue to recieve from friends, old and new, and family and feel so loved that we still have so much support with Mason and the decisions that we make as a family to better his life.

Our little snow man... He LOVES playing in the snow!

The Team Mason Shirt