Two doctor appointments this morning.

Our first appointment was with Dr. Mayman. Unfortunately, we didn't get to visit and talk politics b/c he got tied up this morning and he was an hour late. This was the very first time in over 3 years we didn't get in on time. It did make us late to our GI appointment, but his office called Dr. Baron to let him know we were on our way. Wasn't that nice! I have to say too, today is his admin day... and he squeezed us in early so that Mike didn't have to miss a trip to Beaver.
That's only one reason why we love this guy so much. He's very special to us all.

We didn't get "his numbers" yet because we were rushing out... but we will know soon. Dr. Mayman said so far it looks pretty good. 6:00PM Just in from Dr. Mayman, "The numbers on Matthew's echo were great!!!!"

So, by the time we got over to Dr. Baron's, Matthew was in a VERY foul mood. He was sure to let everyone in the office know... for about a half an hour or so. That's always real fun.

He's very sleepy because he had been up since 2:30 AM ~ yep, 2:30 AM.
Now the tears... along with the whining and crying.
He's goin down.
Down....
OUT.... he is fast asleep during his doctor visit. Ah... some peace and quiet. It made it quite easy for Dr. Baron to do his thing.

He's doing good.

We get to add another cc to his mic key button to help keep it from ripping out. Hopefully it works... we'll try 6cc's if the 5cc's doesn't work first.

We think he had a headache b/c he was so miserable. About an hour after I gave him some baby ibuprofen, he was settled down and back to his sweet little self.

I was sooo thankful Mike was able to come with me today... I couldn't imagine going alone with him being so grumpy and fussy.

It's tough for Mike, these early morning visits because he doesn't get home til around 1:30 or 2:00 AM on a good night.

We like to snag those first appointments ... usually you're pretty much on time.

CNN's Broken Government ~ Healthcare ~ Critical Condition

I got a call from CNN earlier this week to let us know they will be re~airing the special on healthcare.

It will be aired tonight and tomorrow night 5, 8 & 11pm and 3am our time. The entire show is eye opening ~ I wish all our politicians would watch it!

In case you miss it, here is a 7 minute clip ~ starting with our friends from Las Vegas (who are filing for bankruptcy after losing their 18 month old baby girl) and then we come on at the 5:22 mark.

Get our your tissues, the Zeigler's story is incredibly sad.

A "glitchless" version of our CNN interview

This is the "Broken Government ~ Healthcare ~ Critical Condition" special that CNN aired a few times. I wish there was a way to get our politicians to watch this ~ they need to see what is happening in the "real world".

The Zeigler's are up first, then we come on at the 5:25 mark til the end.

CNN this Thursday night after debates

Keep an eye out... we are going to be on a CNN special about our healthcare system, hosted by Dr. Sanjay Gupta called "Broken Government ~ Healthcare ~ Critical Condition".

Not sure how they are going to edit the interview ... or what they are going to air .. you all know I had a lot to say.

I think we'll be on for at least a minute or two discussing the issues we faced. Two other local friends of cardiac babies will be on as well.

I must admit, every time I do something like this, I swear, I'm not doing it again ... it's very draining to re~live all that... plus, I get so dang nervous about it. I just think something needs to be done.. but we are only one of hundreds of thousands of people to go thru this.
Not sure if our system will ever change, it's too big of a business and there are too many lobbyists out there.

Now, before you leave this blog... you must go listen to Matthew count to two on the next post...
it was a huge breakthrough for us and we're just so thrilled.

Terri & Mike on the Radio

Terri and I were featured on a local radio program today. The topic was the problems Nevada is facing with health care. If you are interested in hearing the broadcast, CLICK HERE.

Medicaid "buy in" bill failed to pass the Senate

I found out this morning, Senate bill 59 ~ the Medicaid "buy in" bill we were fighting for, is dead.

This bill would have allowed families of medically fragile children to "buy into" Medicaid.
To pay for Medicaid on a sliding scale, based on income.

As my sister said, "It's terribly disappointing."

We were so hopeful.
I really thought we had enlightened our Senators w/ my testimony and Mike's testimony.

Testimony could not have gone better

Our testimony could not have gone better... Mike has posted the audio below. The audio is a little distorted and I totally sound like I have a speech impediment. Even though I sound like Sylvester the Cat in this recording, I really do talk normal (Mike says I talk fast like a fax machine). Funny. In fact, Mike sounds a bit like Sylvester himself!! Not as bad as me, though!
Mom thinks we sound like Daffy Duck...

We both did get emotional ... we didn't mean to of course,

but to us...
this is such a serious matter. We have been so deeply affected by this. We know that we very well could run out of insurance again w/ Matthew. There are no decent options for us, if that were to happen again.

We think that our testimony did make the lawmakers uncomfortable... It is ashame (a travesty actually) that we do not have some kind of comprehensive "safety net" for middle class families in this state. Especially knowing that 34 other states provide safety nets.
The truth hurts and is embarrassing. The dirty little secret is out. I keep thinking of what we heard last year, Mike and I are the perfect storm.

The local news, KVBC did have a cameraman there and he videotaped our testimony.

Will discuss it more next week ... we're heading up to Beaver for the weekend.

We are emotionally drained from preparing for this testimony. It was like ripping a scab off... and reliving that horrible nightmare all over again. The fears of it happening again are ever so present.

Of course, the bean counters were there discussing how much money it would cost to protect us, the citizens. What they don't realize, it's a matter of life or death for us ...

Terri's testimony supporting the Family Opportunity Act

Testimony of Terri XXXX in support of Senate Bill No.59

Thank you for allowing my husband and I to come and speak today. My name is Terri XXXX. I am a stay at home mother of a medically fragile baby and my husband is a police officer with the XXMPD. We are here today to ask for your support of the Senate Bill No.59 and to discuss further, the importance of providing a comprehensive “safety net” for all families that earn over the federal poverty level.

We are the parents of 23 month old Matthew King. He was born 2 months premature with a rare, life threatening four- fold heart defect. The defect was determined not to be genetic and was completely beyond our control as parents.

His heart defect has ballooned into a host of other medical issues.

By the time Matthew was 10 months old, he had undergone two open -heart surgeries at Lucille Packard Children’s Hospital @ Stanford . He will also require additional open- heart surgeries in the future. We are currently on a path for a third surgery that could arise any day. How many more will he need, we do not know?

We initially felt secure that we had such good health coverage with the police department. I am here to tell you, as a result of the extensive medical care he has received and the 6 months we spent in the intensive care units of two hospitals; 1.9 million of his 2 million dollar “lifetime cap” had been met.

Mike and I did all the right things to prepare for this baby. We took every test possible and all appeard to be good. We united together with our family to welcome this beautiful child into our lives.

There is nothing we could have done in advance to have prevented this from happening to our baby.

We are perfect proof that a loving and responsible family can do everything right in their life, and still end up being financially ruined because of the misfortune of a catastrophic medical event.

Even worse, how can we properly care for this medically fragile child, who will need a lifetime of extensive medical care without health insurance? Even with good health insurance, these precious cardiac children are very expensive to provide for.

We once read that parents should not even file for bankruptcy until the child dies, because the medical expenses are ongoing!

We have been told that we are not eligible to purchase private insurance for various reasons. Even if we could, would we be able to afford the premiums? Mike and I were facing horrible options.

What was suggested most often, was to manipulate the system by obtaining a divorce, with my husband taking the joint assets, so I could appear to be a poor, single mother. Not only is this fraud, but it’s not the example we choose to set for our children!

A representative of The XXXX Insurance Commissioners office stated that we did have options, but we just would not like them. Our options ranged from ridiculous to outrageous. The stated options were: Move out of XXXX, to another state that offers the high-risk pool. No one should be advised by a XXXX official to leave the state, where we have resided, voted, paid taxes and built our life together with our family by our side.

To us, it is no different than what Mexico does to their citizens, by encouraging them to move out and come to this country for better care.

In addition to this option, Mike “could just quit his job” that he values so dearly, and get another job, in hopes of getting more health insurance. Lastly, we could “give Matthew up for adoption!” We would not consider this at all! Why should we give our child up because he’s sick or disabled?

We have been told by many healthcare workers that if we were poor or illegal, Matthew would have qualified for full medical coverage by the state. We feel that the State of XXXX is allowing the system to be broken, by choosing to look the other way.

It gives the impression to the hard working citizens of this state that achievement is a liability and being dependant on the state is rewarded.

When my husband and I were in the Intensive Care Units’s for six months, we saw and heard of illegal alien mothers going home with Medicaid Cards for their babies . Why is it that the baby of an illegal alien mother, will get full healthcare coverage before our baby ~ if we were to run out of insurance?

Matthew is an American~born baby of a Gulf War Veteran who is a police officer that has served XXXX County for over twelve years. What I am saying here is, children like my son need access to medical care as well.

We listened to one mother brag about getting full healthcare coverage for her family, FREE, because she chose not to marry her children’s father.

Can you imagine, watching your child struggle and fight for life, while you worry and fret about how you will pay the medical bills, and the mother of the child next to you, is smiling and telling you that she knew how to get her bills covered?

There needs to be something in place for families like ours! It is society’s responsibility to help those that are trying to help themselves, but are up against impossible odds.

We are not asking for hand-outs. We are willing to pay for Medicaid or a high-risk pool.

I realize XXXX is always cutting budgets because there isn’t enough money. The pie is only so big. I need for you to see the importance of making this issue a piece of that pie and allocate money to it.

Currently, it is easier to deny the program and have those families needing help move away or get divorced.

In your positions, it is easier to shake your heads and say, “Yeah, that’s too bad.... but nobody will support it.”

Please do something now about this, for many legitimate XXXX families are in dire need and that need is growing. I would like to ask you to please put yourselves in our shoes and think about what you would do, if this happened to your child or spouse and you were given the same options we were given.

Families who live in the State of XXXX who earn over the federal poverty level need better and decent options.

Just because we are not at or below the poverty level, does not mean we can afford the extensive and exorbitant medical expenses for our child.

Why doesn’t the State of XXXX have a high- risk pool like thirty four other states in this day of age? Who or what is blocking this essential need?? Furthermore, why doesn’t the State of XXXX have a Medically Needy Program to help families of medically fragile children? (Such as California and Massachusetts)

It would benefit our state to develop high-risk pools for the productive citizens. These productive citizens would then continue to add to our society, and not be forced to add to the dependant burden our State is already straining to finance.

There is no one in any better position, than this senate committee to make this happen.

Thank you kindly for allowing me to talk to you.

Mike's testimony to the legislators

Testimony of Michael XXXX in Support of SB59

My name is Michael XXXX and I would first like to echo Terri’s gratitude for the opportunity to speak today. My wife has been yoked with the full burden of this issue as evidenced by her testimony.

Rather than be redundant, I would like to add my perspective as the primary breadwinner and head of household. My son Matthew was a planned blessing. While he slumbered in the womb I read expectant mother books, painted his room, sewed him a quilt, and built his crib from scratch. I once commented to a stranger that I was nesting more than Terri was.

Anticipation gave way to concern when Matthew was born 2 months premature. The next six months our life was like the movie “Groundhog Day” where the main character is forced to relive the same day over and over. Terri & I would wake up each morning, get dressed, and drive to the hospital to sit by Matthew’s bedside.

I can tell you that our concern over all of his medical problems was enough to occupy our thoughts. I never imagined that we would also be faced with financial ruin.

Like most health insurance plans, ours carries a lifetime cap per person. Until this ordeal, I had never heard of a lifetime cap. I thought once you had insurance, you were safe. Never one to seek a hand out, We first looked into purchasing insurance under HIPPA protection. But no one wanted to cover Matthew since they knew they would lose money. So it was at this point that we turned to the state for help.

We were told that we would not qualify for assistance because I earned more than the federal poverty level. I have never complained about my salary but I could make 20 times what I do now and still not afford Matthew’s initial medical bills.

After exhausting all other options, Terri and I went before the board of trustees for our healthcare and begged them to raise the insurance cap for their members. While not my proudest moment, it saved us from the insulting options that we would have been left with.

As the spiritual leader and provider for your household, how many of you would divorce and purposely make yourself appear to be a “dead beat Dad”? How many of you would sign away custody of your child, thereby acknowledging your inability to provide for your family?

How many of you would uproot your spouse from her family and lose your pension to move to another state with a safety net? Are you aware that government officials and knowledgeable consultants advise your constituents to do these very things?

I pose to you, are these options you would choose if faced with this dilemma? Ask yourself, “Is this the example I would set for my children; divorcing my spouse or filling out adoption papers?” Would you want to explain to your son or daughter, that giving them up was just on paper? Would you spend time discussing or reiterating that mommy and daddy really do love each other, they just have to pretend so they can provide?

As it stands now there is no help in XXXX for the middle class. If you look on your pay stub you will see automatic deductions for Medicaid. In effect, we are paying into a system that we cannot benefit from. This type of income redistribution is the very definition of socialism.

I am asking you to support SB59. Though it wouldn’t help our family, there are others that would be spared the threat of financial ruin. Premiums could be set on a sliding scale based on household income.

I know you are loath to compete with private insurance companies for fear of adversely affecting their business. I can assure you they are not seeking folks like us as customers.

The testimony that we have given today is from our recent, firsthand experiences and I thank you for listening.