Congenital Heart Disease Awareness

Arthur was born with a few heart defects.

I mentioned it briefly in the beginning of this blog.

Thankfully it does not cause much day to day worry in our life,

but is always in the back of our minds.

Arthur was born with Transposition of the Great Vessels, 

an ASD and 2 VSDs

He had to have open heart surgery when he was 5 days old.

To say it was a hard time would be a major understatement

He was in the hospital for 5 weeks and endured many complications

The first year of his life was rough. But right before his first birthday all his cardiac

meds were stopped, he was good to go!!

This picture is from that exact day

( This is actually us)

He has seen his cardiologist once a year since then. Occasionally more for mild concerns, but

has not had any heart related surgery since he was a newborn.

He has some mild "pulmonary stenosis," which is from the surgery.

It's narrowing of the pulmonary artery where the stitching is from his original surgery.

They always told us that it would be around puberty that we may see

the pulmonary stenosis start to affect him.

That he may grow faster then his heart can keep up with.

Meaning the stenosis would get worse.

Which would mean he would require his 

2nd

open heart surgery

As he has reached puberty all has been ok.

He has grown fast and is already quite tall at 13.

But the past 3 weeks he has been

extremely tired.

At first I figured he was growing or maybe he had caught a mild flu.

But three weeks later it has not improved.

My 13yr old is going to bed at 830 by choice

AND

Taking naps! By choice!

These days we try to say maybe it's epilepsy. Maybe he is starting to seize

at night and it's effecting his sleep?

That has never been his M.O when it comes to his seizures.

Then there is that nagging voice in my head,

" Come on Mama.....you know it could be his heart."

He is at "that age." He is tired beyond reason.

It fits.

He was due to see his cardiologist anyway.

So I scheduled him an appointment.

All this makes my heart sink. We worry about so much with him.

To even think he may have to have

open heart surgery again....

It makes my eyes well up and my stomach turn

I would never survive if we lost him

Super Bowl Sunday and two appointments left.....ok three

January went well.

The new pediatrician was great.The kids loved him and so did I!

Our new grown up Doc was a hit with my husband. Hooray!

Very thorough and smart

Both kids went to the dentist and NO CAVITIES! 

Guess they are brushing better than I thought

Hopefully us big people get that good of report when we go.

Then poor Mama (me) had to have surgery.

Some stupid little growths on the bottom of my foot.

Those silly little things required me to be put under and left me with holes in

the bottom of my feet.

Meaning..... a week + on the couch.

A few days is nice. A week? Too much :(

But I did get to rock the motorized cart at Costco

You know your jealous! Ha Ha Ha

This month leaves two more appointments for Mama, 

dentist appts for the grown ups,

AND

finally meeting the new Neurologist.

I have heard nothing but good things about her from colleagues. Even

the new pediatrician said she is great.

So I'm crossing all my fingers

Quote of the day

Privacy

I just wanted to write a short post about privacy.

For anyone that may read my little blog.

I rarely post real pictures and I have changed my son's name on this blog.

Why? 

Because in this day and age you can Google just about anything. I don't feel it's fair to share so much

about my teenage son's life and his peers being able to find it online.

So while the names have been changed.

Every story, every feeling.....is true.

All I hope is that, our story can help others as much as it helps me to write about it.

I'm Thankful For Flexible Spending

As the crazy appointment month begins, I am thankful.

Thankful for, Flexible spending.

Those pre-tax dollars that get put on a little debit card.

Every appointment, every medication refill. I am soooo thankful.

So it took a couple weeks but the appointments are about to begin.
Podiatrist X2
New Pediatrician ( both kids)
New General practice Doc, for both us big people
Plus......
You mean there is more???

Every one gets to see the Dentist!!!

Hopefully no teeth are pulled ;)

We have to wait till next month to see the new Neurologist.
Figures

I don't have any pressing needs for Arthur right now and
this neuro comes highly recommended.
So I guess I can wait

The  appointment fun commences at 0930 tomorrow !!
And whose appointment is first?
Mine.
Go figure

2013 and still seizure free!

We start the new year, 7 months seizure free!!!!

I still think he may have had one a while back. I wrote it in his seizure log, but I am hoping it was just a severe headache and nothing more.

The new year brings ALL new doctors, besides cardiology.

January shall be a busy one.

Like I have said many times before, if you are unhappy with the care or the doctor.

SWITCH!

So that is exactly what we have done. :)

Here is to the hope of a great year and for this to be the last doctor switch

we need to do for a very long time.

Tests, Appointments, and Doctors.....Oh my!!!!

This is more of a vent.......

 Being the parent of a child with 'extra' health concerns

is exhausting.

Most days I take it in stride. This is part of our life.

I take care of all the details

............................

Appointments

Specialists

Medication

Refills

Insurance

Diet

School

IEP's

Heart Disease

Epilepsy

ADD

An example of a regular day?

Between 615am and 715am:

Make sure he got up with his alarm

Breakfast, lunch packed.

Make sure he takes his meds

Make sure his medical ID bracelet on

During that I'm getting my younger one ready too.

Until 3pm......

Chores, errands and such

If I'm lucky

calls to old hospitals to get records that were suppose

to be mailed weeks ago

Make more appointments

Find a new primary doctor cause are new one SUCKS

Then there's that part of my brain that always worries. Will the school call today?

That siren I just heard, is it going to his school?

Everyday, I have to remind myself to breathe

Once the kids are home......

Chores and a little down time

Try to help Arthur study for a couple tests he has the next day

ADD and homework = NO FUN

Meds at 5pm, Meds at bedtime

Lights out 9pm

Make sure he is still breathing before I go to bed

~~~~~~~~~~~~~~~~

From an outside perspective it may not seem like a lot

But this is everyday

Some days are worse then others

I worry if I hear a loud boom

I worry if the dog howls in the middle of the night

I worry if his showers take too long

I worry if he stares off for a second to long

I worry if he is not home from school at the exact same time everyday

Is he ok? Did he have a seizure?

I WORRY CONSTANTLY

As our family has learned to deal with epilepsy in our everyday.

Deal with all the issues and what comes with them. 

We truly have learned to take the good with the bad

We have learned to not let it control our life

But some days, like yesterday

it all becomes too much

the stress and the worry....

It eats at my heart and feels like an unbearable weight