Here We Go Again…..Number 40

Recently we took Max for his “regular” three month Cardiology appointment. That was our first mistake; we had forgotten that with Max very, very little is “regular”. This appointment proved no different. Soon after Max’s EKG was done his cardiologist came in and said the dreaded words no parent of a chronically ill child wants to hear ….”We need to talk.” Nothing good ever comes from a discussion that starts with this phrase.

It seems Max’s heart is in “atrial flutter” which basically means the top half of his heart flutters while the bottom half beats somewhat normally, I say somewhat because the heart rate can be very high to make up for the “fluttering”. All of this is dangerous on so many levels: elevated heart rates and dysrhythmias are never good but people with atrial flutter are often at greater risk for blood clots in the heart. As if this wasn’t bad enough we knew we were in absolute trouble when we were told to “report for duty” at Phoenix Children’s Hospital the next morning at 5:30 am. They wanted us back in less than 12 hours? This must mean it’s even worse than we thought!

Long story short not long after we arrived in pre-op the next morning we were sent on our way for various reasons but most importantly it was realized that Max is super sensitive to blood thinners and the only med they could use takes at least four weeks to reach a therapeutic level. For those of you who follow the blog you may remember our love/hate (mostly hate) relationship with Coumadin last summer after Max’s valve replacement. So here we are on a new cardiac med to regulate Max’s heart rate, blood thinners, drawing nearly daily blood levels, and sporting a 24/7 heart monitor. Life is grand at the Marangella household!

It’s now four weeks later and we will be bringing Max back down to PCH on Friday morning for his 6th cardiac procedure and 40th procedure overall. While we all know I would prefer to do these things at Hopkins we realize that it might be best for Max not to travel in his present condition. We have been assured by both our cardiologist and cardiac nurse, whom we love, that the doctor performing the procedure excels at what he does. So although it is VERY hard to turn your son over to someone you don’t know we are taking a leap of faith and going with it. That’s not to say that I am not an absolute wreck, worse perhaps than I was before either of his last two open hearts but it’s the fear of the unknown, not only ours but the doctors’ as far as their knowledge of Max goes. Hopkins knows Max inside and out and more importantly they know me, these folks don’t know what they’re in for!

Pray for us and stay tuned for more news….

Na, Na, Na, Na, Batman!!

This past weekend Max was the lucky guest of Bruce Wayne, Founder and Chairman of Wayne Industries, and his loyal associate Charles Keller. Our time in the Batcave was phenomenal and we'd also like to thank the Starlight Foundation for making this fabulous event possible for Max.

Is it Max or Robin, Batman's loyal side-kick?

 Answering Mr. Wayne's Call

Although he's not totally convinced, Max took a Spin on the Batcycle

 Everybody took a spin!

Max and a few good friends pose with our generous hosts

Things to Do, People to See, Places to Go

The last of the firsts....Where did the time go?

Ellie's first day of her last year of High School

 

Max's first day of his last year of Elementary School

Max has heart

Delivering toys to the kids in the Cardiac Care Unit at Phoenix Children's Hospital

Max presents the "Roberto Clemente Award" to his friend Willie Bloomquist, shortstop for the Arizona Diamondbacks, in honor of Willie's foundation also at Phoenix Children's named in honor of Mr. Max

 

Halloween

Our Bumble Bee and Pharaoh

Day trips....Lake Roosevelt

Eeeeek! Real bees!

 

Words to Live By

During an e-mail exchange with Max's fabulous 6th grade teacher she reminded me of one of my all time favorite quotes. What I love even more is that she truly embraces this both in her own life and her classroom. Max and I are some pretty lucky ducks to have such a wonderful teacher in his life this year! 

"Everybody is a genius. But, if you judge a fish by its ability to climb a tree, it'll spend its whole life believing that it is stupid."

--- Albert Einstein 

P.S. Another big plus with Mrs. Funkhouser is up until now she's still putting up with me! However, it is only August and Michele is convinced that not even a saint can make it until May with me. He should know we're married 17 years today :)!

Hope Wanes

So far the news this week is mixed, generally good but as is typical with Max there's always something.


Starting with the good news:

• Dermatology can be checked off the list for the next 12 months as they found no changes in Max's numerous moles and other skin ailments. They sent us on our way with some ointments and a fond farewell.
• GI was happy overall but they are quite concerned with the fact that Max is starting to fall off the weight charts. This may be due to several things, impending puberty (say it isn't so!), decreased appetite or simply a growth spurt. Their biggest concern here was that if Max were to get seriously ill or need another cardiac surgery (again, say it isn't so!) he would not have the reserves necessary for a smooth recovery. With a good blood panel measuring the quality of Max's nutritional state and the instructions to step up the calories we can also check them off for 12 months.
• Hematology, the jury is still out on this one until some important blood work comes back looking at Max's blood clotting factors and other antibodies that were present in his blood after last summer's surgery. Either way we should be OK to cross them off the list for a year because no matter what the results are there's nothing that can be done to improve things other than wait and see what happens.
• Ophthalmology found Max's vision to be 20/20! His eyes still turn out a bit but his depth perception seems slightly improved. Continue the eye drops and see ya in a year! Check!

Moving on to the "iffy" news:

• Cardiology, ah good 'ol Cardiology. Here things are a bit sticky, as they always are. Max's echo cardiogram shows some changes on the right side of the heart and his pulmonary valve. I am REALLY starting to hate valves! We were told that this valve is usually slow moving as far as deterioration goes but heck we've heard that before and yet still ended up with major cardiac surgery. This has Michele and I concerned in light of the GI and Hematology concerns I listed above. We were told that echos would have to be done every three months at home and with each set of results Hopkins will evaluate when they want to see Max. Probably not checking them off for 12 months......

The "we don't know" news:

• Pulmonology we haven't had that visit yet so who knows? Stay tuned here.

So there it is Ladies and Gentlemen, Hopkins in a nutshell. Positive thoughts and lots of good echos are what we need at this point. 

On the Road Again

Early tomorrow morning (very, very early, 4AM to be precise) the Marangella's will be taking the show on the road. We're on our way back to Hopkins for one last set of evaluations and tests before the doctors determine if we can be "cut loose" to a once-a-year schedule. It has been so long since we've only had to make the pilgrimage once a year it doesn't seem possible. This possibility seems even more precarious when you consider that the pontifical blessing must come from no less than eight specialists. Fingers crossed that Max can impress all of them. Prayers please!


Stay tuned for updates in our quest for normalcy and a reprieve from our only "vacation" spot!

il Nuovo Maestro Gelatiere

This weekend Max was invited to create a "new" flavor of gelato. The invitation came from a new Gelateria in Scottsdale, Cool Gelato Italiano, who is generously working with Phoenix Children's Hospital to raise funds for the kids. As always Max was super excited to formulate a recipe for his favorite treat and his winning entry was Greek Yogurt with Honey.


On Saturday we were invited to the "unveiling" of Cool Gelato's interpretation of Max's creation and it was nothing short of DELIZIOSO! We were warmly greeted by the owners Letizia and Alberto, and Massimo maestro of artisanal gelato and we are thrilled to say that we have finally found the real deal! Ladies and gentlemen true Italian gelato has arrived in Arizona! Run don't walk to Scottsdale and if you get there soon enough you might even be able to try Max's recipe! 


Enjoy the slide show and if you do get down to Cool Gelato Italiano tell them Max sent you!