I LOVE good news!

Since we had complaints of chest pain.

I had to speak with the cardiologist

sooner then planned

He told me they were very impressed with the

results of his stress test and Holter.

Really?

After that, I was actually looking forward to the

appointment with the cardiologist

Arthur and our family deal with a lot

lots of appointments

lots of doctors

lots of medications

lots of worries

I can't even explain how nice it is to get good news.

We had the follow-up appointment with his

cardiologist,

Dr. Alkon

He told us he would have been happy with the results

if Arthur had a normal heart.

That children at this point, 13yrs post surgery, are not

usually doing this well.

He is amazed with how well his heart is functioning

Can you just imagine me jumping up and down?!

So Arthur has no restrictions, well besides contact sports.

The cardiologist said he actually needs more

daily exercise.

No problem DOC!!!

Who knows what the future will bring heart wise.

But as for today.......

We are very thankful

Thank you to Dr. Vaughn Starnes:

Your expertise in pediatric cardiac surgery saved our son's life

and continues to impress cardiologist's yearly

Thank you to the CTICU staff and everyone at

Childrens Hospital Los Angeles

We are forever indebted to you



Heart week....We need to Talk

As I posted previously February 7-14th is congenital heart disease awareness week.

Arthur was born with a heart defect.

So of course it's a big deal in our house

as is

Epilepsy awareness

The powers that be have made this one hell of a week.

The 7th brought:

the cardiac stress test and a 24hour Holter.

The 8th:

The second half of the Holter 

and

the horrid RASH

The 9th:

Chest pain

(the first time in years)

with neck and back pain

The 10th:

a reprieve

Now I bring you to the 11th:

As I am walking in to the cardiologist to return

the Holter monitor....

Arthur's school is calling

"Mrs.B, Arthur is in the office with chest pain."

Seriously? Again?

What the heck Heart Week??

After getting Arthur from school and speaking to the
cardiologist
We got an appointment with the pediatrician
it was that or a trip to the ER
Ummmm....No Thanks!

So they are thinking it is inflammation of the chest wall.
His Chest Xray was normal, his exam was
normal
So he gets Motrin every 8hrs and
if the pain doesn't improve?

Back to the Doctor we go

So Heart Week.....we are always huge supporters
But enough is enough

Next year....just send me a pamphlet

This is what a skin allergy looks like

Arthur is allergic to latex and alcohol.

He gets a horrible skin rash that lasts for almost two weeks

A few leads from the cardiac stress test and the tech accidentally

cleaning Arthur's skin with alcohol.=RASH

It was only a second before we realized what he was doing

and stopped him.

But it was too late.

When Doctors clean their stethoscopes with alcohol

they have to let it dry before they 

listen to Arthur.

Or this mean rash appears

We learned that the last time he was an inpatient for epilepsy testing

So the poor kid has this awful rash and it's really itchy.

He currently smells like Gold Bond...

But it relieves the itch, so what you gona do?

Cardiac stress test....

 Arthur has been complaining of being tired A LOT,

 so I called the cardiologist.

Since he was to have a cardiac stress test this Spring they just bumped that appointment up

to today.

So we had to be at Phoenix Children's Hospital at 730am

Despite the hour we had to awake at, Arthur was thrilled

to miss a little school.

Fast Facts About the Exercise (Stress) Test 

• The exercise test, sometimes called a stress test, shows how well your child’s heart works and adjusts to different levels of activity.
• It is done at Children’s Hospital in a room with a special electrocardiogram (e-LECK-tro-CARD-ee-o-gram) or EKG machine, and a treadmill.
• Your child’s EKG and blood pressure will be taken while he or she exercises on a treadmill.

 Hooking him up. Arthur is always such a trooper

(this is actually him)

 Here he is running at a fast pace and incline.

They really push these kids.

I don't know which worried me more.....

his heart or his epilepsy.

Either one could derail this test and cause all kinds of problems

But he did great. No problems :)

In the room a

Defibrillator charged and ready to go at a moments notice.

Life with a cardiac kid

He amazes me everyday with all he endures.

He did so well. Followed every instruction to the tee.

He did SO well, that he only missed the first two classes of the day.

Arthur didn't share my excitement

It takes a few weeks to get the breathing part of the test back. Then they put that together with the exercise part to get an overall picture.

He also got stuck with a 24hr HOLTER monitor.

(example)

We don't actually see the cardiologist till the end of March, unless all these 

results come back worrisome.

At that appointment we will go over everything.

Never a dull moment in this household....LOL

~~~~~~~~~

Next up.....Neurologist

Did I mention how thankful I am for flexible spending?

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