Friday, August 13, 2010

Faith


I'll start today with a quick update on Mason. At his transplant clinic visit on Monday everything looked great!


I love love love hearing..."Mason's echo looks beautiful"! After so many months of dreading his echos because of the words... "I'm very sorry but Mason's heart is still in failure." And then even worse, the words that still make me cry to even think about, ... "there is nothing more we can do for Mason. Please just enjoy the time you have left with him"!


Never give up!!! Your special child will let you know when he's done fighting and ready to go Home. But until then, fight with them all the way!


Mason will never be 'out of the woods' for possible rejection. He will always live his life with congenital heart disease and on nasty anti-rejection medications. But, he has a gifted healthy heart now that has given him a new chance at achieving his earthly mission. I thank daily in prayer Mason's selfless donor families and all of the amazing doctors and nurses that have made this a reality in our lives. Dreams can become reality! Miracles do happen!


For now, Mason still struggles with keeping his Cyclosporine level within the correct range (which is why he still has at least 2 blood draws a week). He is also not wanting to eat much at all by mouth, except for water which he loves . Yesterday he ate 2 potato chips which called for a celebration! All his meds seem to be bringing back his severe reflux that he had during heart failure. He gags all the time even on reflux medication! Poor little guy. Thank goodness for his g-tube so he doesn't starve or dehydrate!


Mason also had 48 hours of pukes and diareahs this week :( but, he seems to have kicked it now and is feeling much better.


But, the good news is..... he is down from 38 doses of meds each day to 32 doses. Baby steps to a a happier tummy.


Now, the reason for the title of today's post. Mason's journey has required a lot of FAITH the entire way. Even when it has felt like the sky was falling and the ground crumbling beneath my feet....faith would give me the strength to carry on.


Two days ago I felt my world begin to crumble again. requiring me to muster up enough FAITH to say to myself, "It will be okay. I can handle this." But can I really? I received the phone call we knew would come but had hoped wouldn't....... our health insurance called to tell us that Mason has met his life time max and is no longer covered!!! Yikes! Very scary!


So as of right now we are stuck with a $107,ooo bill from just his day of transplant because of certain things our insurance wouldn't cover, plus $1000's more of bills since then that they wouldn't cover. And now that Mason met his life time max of $2.5 million (which I thought was a max of 2.2 million)..... there's no use to continuing fighting those unpaid bills. They won't touch them!


And, do I dare mention his care from here forward and all of his expensive medications??? Frustrating!! Is it really possible this is happening?!


I'm reapplying for medicaid and social security. Praying they accept Mason this time!
(And thank you to those who e-mailed me advice on applying for financial help back around the time of Mason's fundraiser. I'm presently looking into everything!!) I do have my homework set out for me now.


These words have given me the strength to attempt getting over this very large speed bump:


"I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise!"



This is from the song "What Faith Can Do" by: Kutless. I first saw these words on Paul Cardall's blog a few months ago and then my friend Corrine sang this song at Mason's Fundraiser. The words are absolutely beautiful and very very appropriate for Miracle Mason's journey. I will take strength and inspiration from these words, pray to my Father Above for guidance and help, and I will get medical coverage for Mason!!


Here's the rest of the words to the song:


Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think its more than you can take
But you are stronger, stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining


I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

It doesn't matter what you've heard
Impossible is not a word
It's just a reason for someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing


I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do


Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can!


I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise!


8 comments:

For Our Brave Heart, Sam said...

I'm so confused...I thought with this 'healthcare' reform, one of the IMMEDIATE changes with an end to caps on insurance. In fact, our insurance changed immediately, and it was supposed to change for everyone withing 6 months of the bill being signed (which happened in March I belive). I googled it and came up with the same responce immediately. Check with your insurance and ask specifically about this, because if this is right, then by September there should be no caps on ANYONE'S insurance (per President Obama...). Hope this helps...Continued prayers being sent your way!

The Stewart's said...

I am so sorry to hear about your insurance. Have you checked into the Kurt Oscarson Fund? If you haven't cardiology's Social Worker can give you some information and tell you what you need to do to apply. The fund is available for Utah kids who have had an organ transplant. I have faith that this too will work out for your family. Heart hugs -- Alex's Mommy (HLHS/Transplant)

Jennifer said...

I never even thought there was such a thing as a "life time maximun".
It's so wonderful that through this blog, you are able to get so much information from others in a similar situation!

The Simmons Family said...

Summer... things will work out!! I also heard that the healthcare reform put a stop to lifetime maximums.

SSI continues to deny Owen, but our state has a program called Long Term Care and it's not income based. He also qualified for the developmental disbilities for our state because of his global delays (speech, feeding, motor). I'm sure Utah must have something. Through this program, Owen qualifies for secondary insurance and nursing respite 60hrs a month. I found out about it through our early intervention specailists... maybe it's something to look into? Google: UT long term care, or developmental disabilities. It's just an idea! I'm always reaching for something! :)

I'm thrilled that Mason continues to do so well!! I'm sure it's nice to not have that long oxygen leash following him around all day too!

Ali F. said...

If you could go to CA and get a new heart within a couple of months, on Easter, nonetheless, and have zero rejection, and be back home with your family in 5 months or so...anything is possible! You guys are incredible!

Mindi D said...

Thank you for your post today! I needed it so much! Just when i feel like i can't do it anymore i read one of your posts and you lift my spirits so THANK YOU more than you'll ever know! (Libbi is just fine, it's the rest of life that is getting to me) I know you probably want to slap me cause i do! WHAT do i have to stress about?? Libbi is so great! I hope insurance works out for you, i know it will. It has to! It just doesn't make sense to me that it wouldn't! You are amazing so again THANK YOU for all you do to inspire me every day! Hang in there :)

likeschocolate said...

Sending our love an prayers. We hope Mason feels better soon. I can understand his disire to not want to eat. Poor thing with all the medication.

Stefenie said...

So very sorry for the insurance issues you are facing. Very scary to think that your insurance can be maxed out so quickly but as expensive as these kiddos are to have I can definitely see how you reach your limit. Praying that you can get approved for the Medicaid or SSI. It does help!

I do know that since he no longer has any insuracne it will definitely make it more likely that he will be approved.