Saturday, January 21, 2012

Thank You

Thank you, Janet Pittman, for your donation.  All future donations will be reserved in an account to help pay for the genetic testing the other kids need and for purchase of additional AED's for any of our other children that show positive for Long QT with genetic testing. 

If insurance denies the prior authorization for genetic testing it will cost $350.00 a person.  There are four of us left to be tested.  Another AED will be $1500- $2000.  Each child who is positive will need their own AED to accompany them wherever they go. 

We appreciate all donations received.  

Insurance Denials

We lost our appeal with the insurance company.  We have been denied four or five times now.  The only recourse left is to actually take them to court.  :c

Thursday, January 19, 2012

AED arrived!

Mason's AED and medical alert bracelet arrived!  The AED is all set up and ready to go if we need it.  Thank you to all those who donated and made it's purchase possible!  I am working on getting all of Mason's medical info entered into his USB medic alert bracelet. 

It is somewhat scary and intimidating to see the AED sitting here in our house.  I pray we never have need to use it.  I am grateful though that we have it so that if he does have an arrest we can save him. 

Friday, January 13, 2012

Holter monitor results and other misc.

The doc finally called this evening.  He said the results look good.  His lowest heart rate was 60 and that is fine at his age on a beta blocker.  His QTc's (the numbers they look at to determine risk) were good overall, he had one that was high risk.  He said that they go mostly by what they see overall and he said overall his look good.  He thinks that he is doing fine on the beta blocker and so we will continue to use it.  Contact him if we have any issues.  Otherwise he will see him in his office in March. 

Now we focus on adjusting to all this and trying to find a new normal.  I want to relax and trust the doc, but I can't deny the risks of the condition and I am afraid even though things look pretty good right now.  Don't get me wrong, I am happy to see a good report, very happy.  He is doing fine without side effects on the current meds and I am glad he is able to stick with them and not have to deal with trying to switch to a new med we are unsure of how he will react to. 

So now we work on getting genetic testing for Hunter.  I filled out the new requisition forms today and will mail back tomorrow.  It can take two months for the insurance company to determine whether or not they will cover it. 

Also, we are still fighting the insurance company.  We are in formal appeal.  They have until next Wed.  to make a decision.  We are fighting because we are right, the AED is coverable, and they are wrong.  If we win and end up with an AED we purchased and one from the insurance company we will be ahead of the game if Hunter has the same condition.  Since they would each need their own. If not then we could have one for home and one that stayed in the car.  I want to win mostly because I think someone needs to teach insurance companies that they can't just go against their own policies and deny deny deny and screw people over. 

We ordered the AED for Mason and we also ordered him a medic alert bracelet that is actually a waterproof USB when you open it.  You can personally put all medical history, allergies, meds, test results, etc. on it and it can be plugged into any computer at hospital or doc's office for review.  I think it will be super convenient since Mason has such an extensive list of medicine he is restricted from taking and it is not feasible to always be carrying the huge binder around with all that info and med records.  It will also ensure his medical records are instantly available to EMS in the event of an emergency. 

AED ordered and future genetic testing

We finally ordered Mason's AED.  Thank you to all that donated and helped us be able to purchase this for him. You are all lifesavers, literally.

Any leftover funds or future donations will be in an account for medical needs. 

We  are currently pursuing genetic testing for Hunter, our 13 year old.  He also showed a prolonged QT wave on his initial EKG. This test is not conclusive and genetic testing needs to be done to determine whether or not he actually has Long QT. We are unsure at this time if insurance will pay or not.  There are two genetic testing companies that we have worked with.  The first one, Familion, denied Mason's.  We were then picked up by GeneDX who covered Mason's test.  However, this is not an option for Hunter as we have been notified that GeneDX made an error and they do not actually accept our insurance.  They had already started Mason's testing when they realized this.  They finished his testing as a courtesy, for which we are grateful.  However, this means we are back to Familion to try to get approval for Hunter.  Hopefully, based on the fact we have one child positive already, they will approve the test.    If they deny it, we will have to pay for it ourselves.  Any future donations may be used to assist with this expense, as genetic testing is very expensive.

Once we receive Hunter's test results we will know how to proceed with the rest of our family regarding testing.  I am the only common parent for Hunter and Mason.  This is a dominant gene disorder so if Hunter is positive, they will know that I also have Long QT syndrome.  If this is true then our oldest two children, Jordan (19) and Zachary (17) will also need to be tested.  If insurance refuses to pay, this can become very expensive to test so many people.

Each person that is positive will need their own AED to keep with them, and so we may need to raise additional funds in the future if this becomes a necessity.

Please pray for our family if you are a praying person.  Thank you so much for all the prayers, support, and donations we have already received.  We will forever be grateful.   

1st True Alarm

At 5:30 am this morning Mason's Angel Care alarm went off.  This is the first true alarm we have had.  The only other times I have heard it have been when he's gotten out of bed and forgotten to shut it off.  I ran in to check on him and he felt cold and very still, I jostled him and he took a big deep breath and moved.  He warmed up quickly and seemed to be breathing normally.

Needless to say I didn't really sleep the rest of the night.  I have no way of knowing if he actually stopped breathing or if he was just breathing extremely shallow and delayed.  I had checked on him two other times before that in the night and he was fine.  I hope they get the results of his holtor monitor today and call me. 

A huge thanks again to Karen Harrison for sending us this alarm.  It very well may be saving his life.  

If you are reading this and you are a praying person.  Please keep praying for him. 

Thursday, January 12, 2012

Wednesday, January 11, 2012

First Big Scare

Mason was sleeping this morning.  I had the alarm, (goes off if he stops breathing for 20 seconds), on for his bed and the sound monitor.  I was making phone calls to the AED company when the alarm went off and scared me senseless.  I ran in there as fast as I could and it turns out he had woken up and gotten out of bed, forgetting to let me know and turn the alarm off. 

Thankfully, he is fine and I just have a few more gray hairs to show for it. 

All Quotes Are Back

I called ten different companies today and received quotes for the best AED package price.  I think I have picked a company to work with that has a good price to offer and also has excellent customer service.  I have been speaking with Shane from Dixie Medical and he has been very helpful and thorough answering my questions. 

Tuesday, January 10, 2012

Stress can make you.....

A few of the crazies of experienced lately:

Stress can make you:

 ......suddenly misspell words, you really do know how to spell, like quote.  Then you have to edit yourself.

......decide to start making dinner in the crock-pot, then leave your house to go to the store with half the dinner in the pot, half on the table, and nothing turned on.

....find yourself at the store with no idea why you're there

....laugh and cry in the same breath

.....repeat yourself, multiple times, and have no idea why people are looking at you oddly

.....have wars with a quarter machine, trying to get a tiny rubber turtle for your kid and then when you can't you feel like crying, then laugh because you know you're being ridiculous, especially since you never ever get stuff out of those machines! 

....lose control of your house- you notice when you can't see the table anymore

.....decide everything has to stop so you can clean the house because it's the only thing you can control

.....decide you can take three dogs out on leashes at the same time and find yourself totally tangled in dogs and leashes in the yard

.....feel the need to control a simple card game, because you can

......become so distracted you make beef jerky for dinner, unintentionally

.....forget your vehicle needs gas to run to town in your pajamas, not having remembered to get dressed


Quote Wars

Today I contacted different companies that sell AED's.  I am requesting quotes on the package deal I want and what the best price they can offer is.  I have talked to three so far.  The last person I talked to beat the other quotes.  Tomorrow I have 10 more companies to call.  It appears the companies are quite competitive with each other! Once again, who knew?!

Thank You for your donations to help Mason:

Elizabeth Olinske
Erin Connelly and Karla Oconnell
Ron and Karen Niece

Monday, January 9, 2012


Special thanks to Anne E. Maurer from the Sudden Arrhythmia Death Syndromes (SADS) Foundation.

 Anne has been such a big help to me.  She has been great to bounce ideas off, help me make decisions, and has just been a huge support to me during times when I was having a particularly sad or frustrating moment.  She also sent me a large packet of helpful information on Mason's condition.  

Thank you so much Anne for being there when I didn't know who to call that would understand and be able to give me the information I needed.  

Time to choose a different AED

Seriously, this is one of the most complicated decisions I have made in a long time.  This weekend I was sure we had picked the right one.  Today I talked to some AED companies and changed my mind.  AED's have IP ratings. The IP rating tells you how durable the machine is.  The higher the number, the more durable the machine.  I thought this was mostly an issue for dragging it around and that if we bought a special case to protect it we would be fine. 

Today I found out that the AED we picked is not very durable.  It has one of the lowest IP ratings on the market.  I was informed today that this is concerning because in the event of an actual arrest, people panic and sometimes drop or fumble the machine.  A machine with a low IP rating can actually break if this happens.  I was told today that it has happened and the machine was then incapable of giving the shock to save the person's life.  How horrifying!

Another thing I found out today is that the "shock rate" varies per machine.  This means that the time it takes to for the machine to analyze the heart rate and deliver a shock varies.  The machine we picked this weekend has a shock rate of 20-25 seconds.  That is a long time in an arrest.  That's 25 seconds it's analyzing and preparing to shock and no CPR is being done. Every minute in an arrest without a heart rate decreases the risk of survival by 10%.  We found two other AED's that are capable of delivering a shock in 8-10 seconds.

We also found that some AED's give excellent full coaching of CPR and some give very little.  One of the AED's we are looking at gives total CPR coaching and actually measures the depth and rate of compression and can tell you to push harder and/or faster.  This could be helpful.

So we picked two new AED's and are looking at all there specifics and trying to decide between the two.  I will give it some time before we post our choice, in case we change our minds again! 

I also found a company that sells AED's that is willing to give us a discount on a package that would have the AED plus a hard case, extra pads (which is recommended you always have on hand), and some other extras.   

Sunday, January 8, 2012

Updated Thank you

Thank you for your donations to help Mason:

Tracey Ward
Meghan Kennedy
Jen Grinnell

Saturday, January 7, 2012

Thank you

Thank you everyone for everything you are doing and have done for us.  Thank you for your thoughts and prayers, your support.  Thank you for sharing the link to this blog and sharing our story.  Thank you to those close to us and to those who have never met us.

It gives me peace at night when I think of all the prayers going up on behalf of Mason and our family.  I want everyone to know that we understand not everyone is in a position to donate monetary support, and we appreciate your actions of kindness and your thoughts and prayers just as much. 

Thank you to Erica Leschorn for contacting me regarding her friend Jen's desire to start a pop can drive for Mason as a scout service project.  (Thanks Jen!)

Thank you also to Elizabeth Olinske for putting a flyer together and collecting donations for Mason at basketball.  

Thank you for a special donation that was given tonight with all the credit and glory given to God. 

We are so grateful and so blessed to have such an amazing network of family, friends, and even strangers coming together to support us. 

Who Knew

Who knew choosing an AED could be so hard?!  We have been doing exhaustive research on the best AED for Mason's needs.  Turns out there are a lot of factors to consider!  Not all AED's perform equally, they have different capabilities, durability, etc  So after exhaustive research and several discussions with professionals, we have picked the AED we think will be the most effective, reliable, and durable.

We are choosing the Cardiac Science Power Heart G3 Plus AED.  The cheapest one we have found on sale is $1595.00 plus tax for a total of $1706.65.  We will then purchase the protective case separately for $189.00 plus tax comes to $202.23. This covers the bulk of the equipment he needs, leaving just a couple smaller needs. 

Thank you to the following for donations:

Shelley and John Crouch
The Terry Family
The Manwaring Family
The Roark Family

AED grants and special pricing

Today I researched sources of AED grants, printed AED grant applications and filled them out.  I wrote up a special grant proposal detailing Mason's condition and needs.  Monday I will mail / fax the grant applications and proposals.  If we were awarded a grant it would help reduce the cost of the AED.

I also spent time researching AED's in an effort to choose the best model for Mason.  I looked at coupon offers and opportunities for special pricing.  Monday I will call to see what type of an offer I can get from a company that offers special pricing for kids at risk.  

News from Friday

I intended to post an update yesterday, but fell asleep at the end of the long day instead! 

Yesterday was a busy day.  I continued the fight against the insurance company by calling the Indiana state commissioner's office and filing a formal complaint against the insurance company.  I also contacted Senator Vi Simpson.

Mason completed his 24 hour heart monitoring.  We sent the equipment back.  His doctor will have a look at the data and call us next week to let us know how he is doing and whether or not he thinks the heart medicine is working for him.

Thanks to Kevin Bryan  for donating his time and skills to CPR train our family.  He did an awesome job.  We feel much more prepared to respond in the event of a cardiac emergency with Mason.

Thanks to Jamie Oberste-Vorth for delivering pizza to us.  It was perfect timing and a special treat for the kids after CPR training ended.

Thank you to those that have sent donations for Mason's equipment.   We are hoping to raise about $2,000.00.  The AED alone may be $1500, depending on if I can get it on sale.  I did see one on sale the other day for less.  It will depend on what price I can find one for once we get some funds raised. 

Thank you to the following people for your donations:

Alana Johnson
Amy Houser
Kristin Rensner
Lori Davis
Teresa Nering

Friday, January 6, 2012

Pics and about Mason

I am hoping to update a bit on here each day. Today I am working on getting some pics of Mason on this page. You can see them if you scroll down to the bottom of the page.

Some of you may know Mason, some of you may not. I thought I would include a little about him.

He is an active cub scout and recently participated in a food drive for the holiday food baskets. He attends the cub scout summer day camp each year and has earned several awards. The cub scout pinewood derby is an event Mason participates in yearly. He received third place in his pack last year. We are currently getting ready to start building his car for this year's race.

He enjoys playing on the basketball team, though he is sitting out this season due to the lack of an AED on site, the equipment we are raising funds for.

He loves doing magic tricks, cooking, and of course playing video games!

Thursday, January 5, 2012

Mason's story

Mason will be turning nine years old in February. He was recently diagnosed with Long QT syndrome Type 3, a rare congenital heart defect. This condition can result in sudden cardiac arrest. Mason is a patient at St. Vincent Children's Heart Center.

His doctor has prescribed an at home defibrillator. In the event that he would develop a life threatening arrhythmia, this would save his life. The doctor has stated that he also needs one on site to play basketball and engage in other physical activities.

We submitted a claim for this medical device to the insurance company and they denied it, three times. Insurance has suggested that as an alternative to the home defibrillator we have an ICD placed.  This is a surgically implanted device that would require a maintenance surgery every 5 years.  There are risks to this and the doctor does not feel this is the best choice for Mason at this time.

We are now turning to fundraising online to raise money for the medical equipment Mason needs. This will ensure his safety at home and during physical activities, that he would be otherwise restricted from participating in.