Maybe, Just Maybe Third Time Will be a Charm?

This might just be it folks, they brought Max back to the OR about 45 minutes ago and so far no one has come out to say we can't go ahead and finally get this done. I can only hope I didn't just jinx us....

Please pray and stay tuned.....

Third Time's a Charm

Or at least we're praying it will be! The cardiac surgical scheduler called yesterday to let us know that Max was scheduled for his procedure on Friday the 21st, the Monday before Christmas! Are they kidding me? First they wanted to do it the day before Thanksgiving and now just a few days before Christmas. Evidently no one realizes that we too like to celebrate holidays. 

Long story short, because Max is a "rock star" (the scheduler's description not mine...although I tend to agree) at Phoenix Children's they moved the kid that was scheduled for Monday the 17th so that Max can be first case that day. If all goes well, or at least better than the first two attempts at this, Max could/should be as good as new in time for Christmas. Again, that's what we're praying for!

Stay tuned and pray like mad for "good" blood levels!

Too Little, Too Much, Too Late

Where to start? The first thing I should do is apologize for the late update but there are two very good reasons for the lag time: one, we were all mentally and physically exhausted last night and two, I was really too frustrated and angry to write anything that would be less than venomous!

The long and short of it is we did absolutely NOTHING yesterday! For those of you who don't know us or Max well you will probably think I'm making this whole thing up, for those of you who do know us you'll know this is par for our course. After spending the entire day in pre-op, where not a single medical professional soul darkened our doorway, we finally had Max's blood draw done around 3 o'clock. Why so late in the day? It's simple really, nurses don't always listen to moms so although I continually asked our nurse, who was quite busy sitting on his posterior, to draw Max's blood levels it took the surgeon coming out and yelling at everyone involved because the results weren't available thus delaying Max's procedure even more. When the nurse finally came in the room, quite angry about the whole thing, he quickly began manhandling Max and treating him as though he had no right to be upset with this treatment. He was in a rush and Max was holding him up! I have never in all my eleven years in pediatric facilities seen a nurse so impatient and ambivalent towards a child. I was absolutely appalled by the whole scene.

Shortly thereafter Max was finally brought back to the OR, five hours behind schedule. The nurse and Max were no sooner out of sight when several doctors came out to the waiting room; this is never a good sign. It seems Max’s blood results had just come back and his Coumadin levels were dangerously high. Max had such a high level of blood thinners on board that they were not going to be able to go ahead with the procedure for fear of a bleed out. It only got worse from here. The surgeon told me this could be reversed with blood products but this would take time and the anesthesiologist couldn’t be bothered to waste her time with this part of the plan. So up to this point Max had both a nurse and at least one doctor who couldn’t have cared less about him or his level of care. Although the surgeon wanted to continue with the new plan he could tell the anesthesiologist was not on board so he decided to simply put a band-aid on the problem by shocking Max’s heart back into rhythm. It took a total of about ten seconds; we waited all day for a procedure that took less than a minute and would not be definitive.

The moral of this story is that our first attempt at this procedure failed for too little blood thinners, the second for too much. Moreover the second failure was due, in our minds, to actions that came too late. If the nurse had drawn Max’s blood when we arrived in pre-op at 10am they would have had time to reverse the levels and proceed as planned. If the anesthesiologist had not been worried about being late to whatever else she had to do we still could have finished up yesterday. Instead we’re on borrowed time awaiting the inevitable, a third trip down to PCH to try it all again.

So although the whole experience was frustrating and emotional I need to thank the surgeon and our cardiac nurse, they were both stellar even in light of the fact that they too were just as frustrated as we were by the whole series of events. In the end the one who will suffer the most from all of this is Mr. Max. I still don’t know how I’ll convince him to go back for a third time…..

Pre-Op Update

Yes we are still in the pre-op area waiting for the "first case" to finish before they can take Max back. We've been here for about four hours and if I hear the phrases, "I'm bored" and "I'm hungry" one more time I might just explode.

Pray that I'm able to keep Max from running to the door....or at least as far as the hospital cafeteria :)!

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!

Max's Weekend

And once again, the Cardinals take the trophy! This past Saturday marked another round of Flag Football Championship games and I am happy to report that Max and his teammates took trophies home again! A big "thank you" goes out to Kids Playing for Kids for giving Max this incredible opportunity. And as always a congratulations to all the boys, and believe me a better group of kids would be hard to find, they all have incredibly big hearts and compassion for Max plus they rock as athletes! Their parents have much to be proud of.

 Spencer, Tanner, Max, Tyler, and Billy after the Post-Game Activities

Mom and Dad with their Star Player

Famous American

A few weeks back Max came home with a rather large, multi-tasked project entitled "Famous Americans".  The kids could pick their subject and Max apologized to me for not picking George Clooney but rather doing Steve Jobs, "for Daddy". Isn't it just like boys to stick together? This is Max's final product, the only help I gave was sewing Steve's black t-shirt, the rest I left to Max and Michele - that's what you get for not picking George, left them on their own!

Max's 5th Grade Project:

Steve Jobs - Famous American

Another Miraculous Year!

I admit that every year as May approaches I spend a lot of time reflecting on things I spend the rest of the year trying to forget. For instance, I remember that first year on the 4th floor of the “old, old” Phoenix Children’s Hospital when absolutely nothing seemed certain. Sometimes we lived day by day, others it was minute by minute. Doctors promised us nothing and we learned to count on exactly that…nothing. But through it all we had faith, faith in God and faith in our son. Somehow, someway we knew we would all make it through. And we did, here we are an incredible 11 years later and Max is not only surviving but thriving!

How did we get to a place where my “baby” was turning 11 years old? Some dark days may have dragged but oh how the years have flown by! Last Wednesday Mr. Max turned 11! Many would consider this a miracle and I admit we can be counted among those who do. This is especially true in light of the many “events” of the last year, it seems incredible that just twelve months ago we were preparing for another open-heart surgery not a birthday party. To see Max running around during his “Birthday Festivities” (of which there were many!) we nearly forgot just how sick he was this time last year. It truly is nothing short of miraculous!

Max, we wish you a very happy and HEALTHY year and a hundred more to come! No words adequately express our love for you and our awe of your courage and strength. We thank God everyday for the present that you are!

Now for the fun….enjoy this video of Max’s class singing to him and enjoying a cupcake treat!





Breakdown

Over the last few months I think I have suffered a bit of a “breakdown” not at all in a negative sense but rather in the sense that after the last year we have had I just needed to take a break. A break from the constant stress and worry about the things we just couldn’t control but we thank God turned out so well. A break from blogging about, thinking about, or even talking about one medical crisis or another, I decided to pack it all away for a bit and breathe.

Last year brought so much, both good and bad. It had been many years since we had three surgeries in a six month period. In so many ways it felt like we had gone back to square one, an eerie place we had been before but had hoped to never revisit. It seemed we were reliving Max’s first year of life when multiple surgeries, following in quick succession, were our “norm”. Long hospital stays, ICUs, ventilators, etc. were part of our distant past but yet we found ourselves in the midst of the chaos again. We were sorely out of practice but as they say it’s like riding a bicycle you never really forget no matter how hard you try. We quickly found our groove and went back on auto-pilot.

Without doubt the worst part of the last year was watching Max go through all he went through. Missing out on school vacations, summer breaks, lying in a bed with tubes coming out of every imaginable place and seeing the suffering in his eyes. Throughout it all he complained very little but we have seen so many changes in Max recently we can’t help but wonder what scars he has from his most recent battles. Surely some of it is just the result of a little boy growing up but much of it must be attributed to the pain, both physical and emotional, he went through this last year. I have spent a lot of my newly found “free time” just trying to be a normal mom (still not sure what that is and if it even exists) in a normal mother/son relationship trying to help Max bounce back. I’m happy to report that underneath it all Max is still his same old goofy self!

In the midst of all of this, as things started to calm down and Max’s health “report card” seemed to be getting straight A’s I think my mind just went into hibernation and I needed to take a break from being the mom of a chronically ill child. Obviously I am STILL the mom of a very special little boy who is in fact chronically, seriously ill but we’ve been in a “lull” and I’m milking it for everything it’s got. I’m enjoying this period of almost no medical fire drills, happy doctors, good news, and most importantly a happy and healthy Max.

So my “vacation” is over and I’m back in full force, watch out Blog World I’m baaaaaaaaaaaaaack!

Has it REALLY been a month?

I realized that it had been a good while since I posted anything about "A Day in the Life of...." but when I logged in this evening I realized it had been a whole month. Yikes! Where did the last 30 days go? I'd like to say that there's been lots and lots of exciting stuff going on in the Marangella household but sadly enough we've been pretty boring. Although God knows I'll take boring over our usual brand of "excitement" any day!

To be honest I logged in tonight feeling inspired to write something profound. After all, with a view like this who wouldn’t be inspired?

And as if this view wasn’t inspiration enough there is the added bonus of sitting in a very quiet hotel room. No, I have not left my family although as I sit in a room that someone else has cleaned, watching a TV show I picked, and not screaming at anyone to do homework or get ready for bed I must admit that the idea of not returning to our insane asylum has actually crossed my mind! The truth of the matter is I am traveling this week to a client site in Montana and I thought I might find something profound to share, some words of great wisdom that have been rattling around in my head but to be honest….I got nothing! In fact, I think I’ll crawl in to bed, find a movie I want to watch and hopefully fall asleep peacefully and not from sheer exhaustion….

Here’s to a more insightful post in the near future and more business trips to quiet hotel rooms!