Sunday, September 4, 2011

Welcome to HOLLAND

It was time to start collecting all of the information needed to schedule and prepare for Mason’s Fontan Surgery. So last Friday – Mason went in for his Cardiac Catheterization. (Defined below)
Cardiac Catheterization (Heart Cath) is the insertation of a catheter into a chamber or Vessel of the heart. This is done for both investigational and intervention purposes. Subsets of this technique are mainly coronary catheterization, involving the catheterization of coronary arteries, and catheterization of cardiac cambers and valves. (Did you get all of that?!?!?)

When we arrived at Seattle Children’s Hospital– Greg was busy checking us in and I sat with Mason in the Surgery Center waiting area. Mason and I talked, I kissed him, I played with him… I pulled out all the stops so that he would not remember that he hadn’t eaten in 12 hours and that he was at his least favorite place – Children’s Hospital.
During some point of my “operation distract Mason” I noticed you staring at us from across the waiting area. This was nothing new for us. I have gotten used to the curious eyes of onlookers – Wondering what we were doing here and us wondering the same thing.
Having Mason forever changed the course of our lives or perhaps it unfolded the exact way it was meant to… Just not the way we had planned.

It was our turn to go through the surgery center doors…Our names were called.
I grabbed Mason, Stood up and gathered our things. It was at that moment I noticed you in greater detail:
- You had just given birth, I knew this because you were in a wheel chair with a UW medical bracelet – You hadn’t yet been released from the hospital but due to circumstances I assumed they have allowed you to come visit your child.
- Your badge for Children’s hospital was for the CICU (Cardiac Intensive Care Unit). I knew at that moment we faced similar challenges and at this very moment your child was probaly in surgery.
- I knew that only recently your life had changed dramatically and you were wondering “how did this happen” / “How did we get here”. I should have recognized that shocked stare earlier because three years ago I sat in almost that same spot in a wheel chair with the same shocked look.
- I assume the man sitting next to you is your husband.

I walked with Mason towards the doors and as I passed you our eyes met and I smiled. I hope in that moment you felt my understanding. I believe you did.

If I had the opportunity in this moment I would sit beside you and I would tell you that you might not believe it in this second but you will be Okay.
I would tell you to dig deep within yourself because there lies your strength and resilience. Trust me when I say – You don’t realize how strong you are until you have to be.
I would tell you to always honor your feelings and let the tears flow how often and when ever they need to. You need energy for much more important things than holding in your emotions.

I would tell you the man sitting next to you (presumed as your husband) might cope with all of this differently and he may even feel like running the other way. Hang onto each other he is just as scared as you are.

Don’t neglect yourself you are needed to take care of your child the only way a mother can.
Never underestimate the power of good nutrition, exercise, sleep, supplements and if needed an empathetic therapist. (This is advice comes from my husband; I struggle with this one myself).
Work on staying healthy in your mind and spirit.

As you continue through this journey remember that you know your child like no one else. You will have numerous professionals be apart of your life they will teach you about your child as mush as you YOU will teach them.

Seek other mothers like you. This is the road less traveled and you will feel alone along the way. Especially in the company of healthy children and their parents. This is a feeling I can best describe as isolation. However we are out there. You can find us online – through blogs and facebook, in support groups and wandering the halls of this very place. You will recognize us by the extra lines on our face and the worried look in our eyes.

Grief will come and go. This is confusing because your child will bring you such overwhelming joy and sadness.

This life is not easy:
- Be educated but not overwhelmed
- There is no doubt; you are capable and the rewards is very worth the fight
- Know that there will be bad days and good days. During a bad day – focus on the good ones

I would tell you that will witness procedures, surgeries and suffering well beyond what any parent should ever have to bear and beyond what any child should have to endure.

Your life will not resemble the life you had planned. No amount of money, fame or power can change this new course you are on.
It will be as though you have landed in Holland instead of Italy and after sometime your dreams will adjust and this new reality will become normal to you.

Others probably won’t get it – They can’t. This is a very unique and complex journey on all levels.
We can not expect anyone who is not living this life to understand.
Be patient with the people, they mean well.

I would tell you to smile at the new mom or dad sitting in the same place you are today starting this journey. Their path will be different; all of ours is. It could be longer it could be shorter. It could be less or more complicated.
But they are; just like you; looking for a sign that they will survive this.
And by the grace of God – no matter the outcome we all do.

I am now crossing the surgery center doors when the nurse knocks my thoughts out of my mind “Kelsey can you confirm Mason’s birthday?”
I guess it is back to my reality. Within one hour I will be handing my son over to a surgeon left standing in tears.

For having half of a heart I would say the results of Mason’s Cardiac Catheterization were picture perfect. The next step for us is to schedule Mason’s Fontan. His Cardiologist will be presenting his case to the surgeons on September 6th. Once that is completed they will schedule the surgery.

Below is a quick description of the surgeries Mason has had as well as what his upcoming Fontan Surgery will do:

In a normal heart each ventricle does a separate job. The right ventricle pumps blood to the lungs and the left ventricle pumps blood to the body.
In a single ventricle heart (HLHS Children have single ventricles) there is only one ventricle large enough to do the normal job of pumping blood. Thus, we need to configure the circulation to maximize the efficiency of this single ventricle.

This ultimately requires committing the single ventricle to doing the harder work of the heart, pumping blood to the body. The job of getting blood to the lungs must be done with out the a pump.

Whenever there is only one ventricle large enough to do a normal job of pumping blood, we need to configure the circulation to maximize the efficiency of this single ventricle without overworking it.

The Fontan Circulation refers to this configuration. Where the single ventricle pumps blood returning the lungs to the body, and the blood returning from the body travels to the lungs via a direct blood vessel connections without a pumping chamber. In any individual child there may be different procedures needed to achieve this goal.
Operative stages for achieving a Fontan Circulation (End goal):
The type of operation needed in the newborn period is quite varied depending on the specific type of single ventricle cardiac defect.

Mason has a more complex heart disease and required a more complex operation: The Norwood procedure.
Whatever is needed in the newborn period, the aim is typically to balance the blood flow between the lungs and the body, achieving stable oxygen levels and adequate heart function.
The second stage operation is called the “bi-directional Glenn”. Mason under went this surgery at 6 months old.
During the Glenn Operation the large vessel that drains blood from the head to the upper body back to the heart (the superior vena cava) is taken off the heart and sewn directly to the pulmonary artery.
The Glenn operation has two major advantages in most children. First, because the connection is a direct one between blood vessels, rather than made of artificial matter, it has the ability to grow with the child.
Second, it removes some of the work pumping blood to the lungs from single ventricle so that the ventricle will no longer have to pump all of the blood to the lungs in additional to all of the blood to the body, which place it at risk for early heart failure. In most cases this stage is tolerate the best of all the stages with a survival rate of 95% or better.
After the Glen operation most children will have oxygen saturation levels of 75% or better. Mason sits with an average 81%.

The third and final stage in the reconstruction of a single ventricle heart defect is the Fontan Completion Operation. This operation is usually performed between the ages of 3-5 years old based in the Childs size and clinical status.
This is the surgery Mason will be having this year.
During the Fontan Operation, Blood returning to the heart from the lower half of the body (via the inferior vena cava) is connected directly from the pulmonary arteries. Up until this operation the blood has bypassed the lungs resulting in lower than normal oxygen levels.
After the Fontan operation, oxygen levels will be nearly normal (in the 90’s). The two most common methods of performing the Fontan completion today are the “lateral tunnel” and the “extra cardiac” techniques.

In the lateral tunnel method, a tunnel-like patch is placed inside the atrium so that blood returning from the inferior vena cava is directed through this tunnel. A connection is then made between the end of the tunnel / top right atrium and the underside of the pulmonary artery.

In the extra – cardiac method, the inferior vena cava is taken off of the heart and synthetic tube, usually a Gore-texTM, is sewn directly to the top of the inferior vena cava and to the underside of the pulmonary artery, routing the blood flor outside of the heart.

At this point we are unsure which route Mason’s surgeons will take. This is one reason behind completing a Cardiac Cath. to determine which route will be best.

Currently patients who are well prepared for the Fontan completion have a 90% success rate.


I leave you with this very appropriate poem...
WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

1 comment:

Johanna Jane said...

Kelsey, thank you for constantly putting life into perspective. You are an amazing woman! Hugs and loves from my family to yours! Xoxo

 
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