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