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.

Matthew on a swing up in Beaver ~ he was loving it!
We were just toodling around the cabin.
While everyone was "being a rock star" playing Rock Band on PlayStation, Matthew crashed in this most uncomfortable position.

Casey having his heart procedure today

Update: I just got home ... it's 4:15pm. Well, the surgeon was not able to get the results he wanted. He and another surgeon spent 2 1/2 hours working on him. That's all I know for now. We are disappointed. It sounded to me as if this is just something he'll just live with. Before the surgery, he did say the node was in a tricky spot. When the nurse came out after an hour and a half, she said "it" was being a "real booger". Will know more later. Casey is doing fine, just nauseated ~ poor kid.

Today at 9am, Casey is having an ablation. This is a procedure that can be done via catheter in the cath lab.

This is going to be a re~do from a previous attempt in December.

Please say a little prayer that all goes well.

ECHO results

Dr. Mayman figuring out Matthew's leak "numbers". It's rated a 2 now ~ which is kind of crazy because during his last ECHO it was a 3 and the time before that was a 4.
So, we got great news today!
(Sidebar: Once it gets to an 8 we need to talk about surgery and a 10 means surgery time.)

Waiting for the ECHO.
Strapped up "halter monitor"... it's a little EKG machine he needs to wear for 24 continuous hours. He has little stickies all over his chest. This should be interesting!

Getting ready to listen to his own heart at Dr. Nakamura's. Dr. Craig gave him his own kiddie stethoscope.

Matthew's ECHO results could not have been better!!

Dr. Mayman said that it could be anywhere from 5 to 10 years before his next surgery! WAH HOO!!

Just reading a book on the drive home from Beaver.

Talk about stopping til you drop. This was last night after we got home from Beaver.

This was in Beaver, he was so tired he fell asleep on the kitchen seat. Before he passed out, he was chasing after mom w/ his eyes closed.

News Flash!!!!

Out of the clear blue ... Matthew started singing ...

"twinko ... twinko ... litto ... tar!!" I almost passed out *big eyes* ... but first, I had to acknowledge that I knew what he was singing .... so I started singing it with him again. (He's never even SAID twinkle, little or star.)

I raced to the phone to call Mike ... he was able to hear him two more times...

Wow.. I am in shock.... it was SOOOO great!!!!!!!!!!!!!!!!!!!!!!!

I of course had to call his speech/feeding therapist Shay, to let her know .... she's a big part of why he's doing so well. Actually, all the girls from Nevada Early Intervention are the greatest and have worked wonders w/ Magoo .... Christy and Erin, too. We love them all. Kristina and Shirley have been a part of Matthew's care too, but are no longer his little helpers ~ thankfully we stay in touch. His services will end on his birthday, we will be so sad... these girls have been such a huge help to me and Matthew over the past 2 1/2 years.

*DEEP BREATH*

okay, enjoy the pics I posted below.....

Ethan and Matthew painting w/ cool whip. Ethan loved eating it.. Matthew wanted no part of tasting it.. shocker! This is Erin of NEIS at the table, she and Christy were the "play masters".

I know it's kind of dark, but it's so cute. If you look to the left, you can see Matthew's back in the striped shirt.. trying to make a getaway. You can see our friend Trish at the table.

Wearing daddy's baseball cap.

Just checking out how it looks in the mirror. His t~shirt is so cute, it says, "That's it, I'm going to Grandma's". His Grandma Sue got it for him.

All is fine around here. I know we've been lame about keep up the blog.

We had a fun little playgroup yesterday w/ the Nevada Early Intervention Team and little Ethan, he's almost 3. We're getting Matthew used to being around other kids ~ healthy kids of course.
This was our third playgroup and it was quite fun and funny! Trish is wonderful for driving clear across town so Matthew can play with him during these supervised visits.

We'll go see Dr. Mayman (pediatric cardiologist) next Friday for his six month ECHO. As always, I get SO NERVOUS about those visits.

We also go see Dr. Nakamura next Thursday for a check up on the ole lungs.

Casey will be having ANOTHER ablation (cath) surgery on his heart on the 18th, not sure what time though. Hopefully he'll have better luck w/ no IV fluid dripping on the equipment cables.

Off to Beaver for a few days! We're excited about going, Matthew and I haven't been up in two months. Mom and LeRoy are going up w/ the motorhome tomorrow. It's always a good time in Beaver.

Mike reads to Matthew every night that he's home. This is a favorite time!!

Our little "cool Joe".

Colin and his family could use your prayers right now

On Valentines Day, I had requested prayers for baby Colin (he has same defect as Matthew) ~
he was having his second open heart surgery that day in Boston.

He isn't doing very well.

Mel and Tim are requesting prayers for their little Colin. Here is his site if you would like to go leave an uplifting comment. We sure loved comments when we were in the hospital with Magoo.

Thank you so much, WE KNOW THE POWER OF PRAYER! Matthew is proof. My heart aches for the family...we know how hard this is on them.

My Everything

Isn't this a precious picture? Terri sent this to my cel phone while I was at work Tuesday. I was showing it to the other sergeant I was riding with. I told him, "There is my everything."

Shower boy

Getting a Mohawk from Daddy.

*giggling* He looks so cute in the shower. He's been taking showers instead of baths lately. It's better for his skin to not be sitting in water (he has a form of eczema w/ a crazy name).

Isn't this the cutest towel ever! His Uncle Joel gave it to him! Thanks Joel.. we love it!

I crack up everytime I get this towel out.

The wife of a friend on Mike's squad, gave Matthew this fun carpet w/ some diapered wooden animals. We love it ... it's a big hit ~ Thanks Joy and Wes!!

After one solid month of not eating/tasting a thing by mouth ~ yesterday I got him to taste (not so much eat, but it's a start) some chopped up grapes, apples and a teeny tiny peanut butter sandwich. I've been having a bit of luck with the white string cheese.

All of that did end up on the floor ... guess he was done! Oh yes, I do see some Cheerios too. He will taste those.

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.

Quick update

Matthew is beginning to feel better. His retching is under control now, too. That was a real problem this time around. He retched non stop for a couple weeks and it was quite miserable for him. (us, too... that is never fun to watch)

He had a great day today. Still a little junky in the lungs, but we are working on that by extra inhaler treatments that contain steroids, percussion treatments and manual chest manipulations. He loves the chest manipulations, he just lays there and let me do my thing. He usually starts giggling. We are doing everything possible to avoid that dreaded Prednisone. We avoid that like the plague.

It's been nice to see him smile and be happy again.
That makes me happier, too.

It's been a tough month, that's for sure. These little guys w/ lung issues really take this kind of thing hard. It's a reminder how fragile he really is. He's not like a normal kid when they get a sniffle. For us, there is no such thing as a "simple cold".

Still not feeling so hot

Hopefully he'll be better tomorrow... tomorrow will be his last day on antibiotics.

Mike just got "the call" :-)

He starts his new position as a Sergeant on March 8th.

I am so proud of him, he worked so hard for this.
He's beaming with that great smile of his.

Feeling Better

A five day regimen of Antibiodics coupled with his own ever-improving immune system has brought Matthew out of his cold. It is great to see him this chipper first thing in the morning.

Le'me have that cell phone ... blink blink

Under the weather

Matthew has been trying to fight off nasty cough and cold sypmtoms for the past 10 days...
and he just couldn't do it. Talk about grrrrrrumpy, fussy, whiney and clinging. Uh Muh Guh!!!

He never did get a fever. (?) After listening to him wheez and try to breathe last night on the baby monitor, I decided it was time to take him in to see the doctor. This morning during a "retch" I noticed that his lips were a bluish tint, so off we went.

He's now on Zithromax and extra breathing treatments. We are trying to get away with NO STEROIDS... if his wheezing isn't better in about 4 days... we'll have to put him on prednisone.
Cross your fingers... steroids are not fun for these little guys... OR THE PARENTS.

Anyhoo.. that is the latest update on the GooMan.

And, in case you missed us on the CNN program tonight.....
you can watch "Broken Government: Health Care - Critical Condition" Sat 6 a.m., and Sun 4 a.m., 6 a.m. and 11 p.m. (all times eastern).

CNN just informed me that it will re~air Saturday, Feb. 9th at 8 p.m. Pacific time and 3 a.m. Pacific and the next Sunday 3 a.m. Pacific.

The Zeigler's were up first, then us.

The Zeigler's Story on CNN

I got this off of Dr. Gupta's website. I sure wish our politicians would watch this kind of thing!

Wednesday, January 30, 2008
It can happen to you

By Dr. Sanjay Gupta Chief Medical Correspondent

The Number 1 cause of personal bankruptcy in the United States is unpaid medical bills. As we found, it is not just the uninsured, but also the underinsured. It is also people who think they have excellent health insurance, but it is simply not enough.Dawn and William Zeigler were living the American dream with a nice house, cars and plenty of money. When their daughter Brooke was born too early and required multiple surgeries, they never considered the cost because they thought they were covered. And, they were, at least for a while. They were amazed at how quickly the bills piled up, though. Tens of thousands of dollars a day, and soon their policy no longer provided any money. (Watch Video)Brooke Zeigler died when she was 18 months old. Her father told me that he had to tell the doctors to stop working on her. It was the hardest thing he ever had to do in his life. The bills that arrived for nearly a million dollars may pale in comparison to losing one's child, but the Zeiglers are now at real risk of losing their dreams.The health care debate is complicated. Again, the Zeiglers were covered, but not enough to cover little Brooke's millions of dollars of expenses. This is the reality of our broken health-care system and continues to be one of the biggest domestic issues on the minds of voters. Any thoughts on how to address this specific issue within of our health-care system?Programming note: Watch "Broken Government: Health Care - Critical Condition" on Thursday and Sunday at 11 p.m. ET (8 p.m. PT)

This was a bullet we dodged last year, but thank God we didn't lose Matthew.

Remember when this story aired in November 2006 right before we ran out of health insurance for Matthew?

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.

Matthew Counting

All the kids up in Beaver had a positive effect on Matthew. He tried new foods, interacted socially, and even had a speech breakthrough. I was counting to him with one of his books and he actually started counting back. I quickly grabbed my cel phone and shot this video.

Pictures while in Beaver

*giggling* Isn't this the funniest picture! If you look close, you can see a bit of a "shiner" over his left eye... he took a little tumble down the stairs. (yes, it scared me to death, but he was just fine) He also biffed and fell on his bottom lip in the mudroom. He was officially broken into boyhood this past week.

Matthew's little Beaver girlfriend, Ashland ... she is so cute! They each wanted that chair.

Here is Vanna Banana reading to Matthew. He was quite spoiled with all the girlies reading to him.

Mom got him this cutest snowsuit, mittens and boots ~ it kept him quite warm.

Watching his daddy and Uncle Timmy being "spidermen" on the scaffolding.

Taylor and Shania spoiling Matthew w/ book reading time.

Trying some of Aunt Tanji's mac and cheese.

Just chillin.

Shania (Nia Bug) reading to the Goo Man again.

He's been having cold and cough symptoms since the day we got home. So far, he's not feverish, but he is coughing his head off and very snotty ~ QUITE GRUMPY and not sleeping well.

I am hoping to avoid taking him to the doctor.... I am keeping an ear on those junky lungs.

Oh well, maybe it's good that his body is having to fight off this kind of thing.... but it sure isn't fun.

Isaac's Blog

Isaac's Blog
The Rollers found out tonight that Isaac will need a third heart surgery, scheduled this coming Friday at Stanford. Poor little guy, he just had a 13 hour surgery in November ~ they've only been home for one month. This was very unexpected, please keep the Rollers in your prayers.

Happy New Year!

Happy New Year Everyone! Here is our Annual New Years Eve picture before I headed to the Las Vegas Strip. Thankfully it was a quiet, albeit cold night.

Matthew's 1st and 2nd New Years Eve

The Workbench

Matthew received this 100% Dad approved workbench for Christmas. For the first few days he was a little wary of it. But last Sunday our Friends Trish & Avner brought their son Ethan over for a visit. He had such a good time in the workshop that it inspired Matthew to give it a try.

Snow Suit

A few weeks ago when we were in Beaver, UT Terri snapped these photos of Matthew in his snowsuit. Doesn't he remind you of the little boy from "A Christmas Story"?