Saturday, December 31, 2011

December in Pictures

What December meant to us....




Max's first ever clarinet recital


Benny Goodman lives.....



Zoo Lights



Accepting a donation for Max's Market from the generous folks at University of Phoenix







And perhaps the most exciting outing of all........earlier this month we received a call from our favorite Diamondback, Willie Bloomquist, asking if we'd mind him naming his new foundation at Phoenix Childrens' Hospital after Max.....





....And this is how the "Abe and Max Fund" at PCH (http://www.abeandmaxfund.com/) was born





Ready to deliver the new electronics to the kids at Phoenix Children's





The excitement of Christmas morning




Gee, I think he likes this gift! Thanks Santa!

Thursday, December 8, 2011

It's Still Good....

Despite a bit of a scare yesterday concerning the CAT scan results of Max's heart and the status of his aorta and Mitral valve everything is fine, or in the words of the cardiac surgeon "perfect". Of course Max's "perfect" is relative but it's still better than "not perfect". We went from once a year visits to another valve replacement back to once a year visits in slightly over 12 hours. Just another whirlwind of emotions in the world of raising a chronically ill child.

So indeed it seems like we're done here at Hopkins for a while. Although it was decided that we could resume our every 12 month pilgrimage to our medical Mecca we have decided, together with some of the doctors, that we will return in June. Basically this decision was motivated by a few things, one, everyone thought one last check wouldn't hurt and two, more importantly we wouldn't get stuck here in the winter anymore. Obviously, although I don't want to return so soon I just couldn't turn down dispensing with our winter tour of duty.

Overall this has been a great trip and it feels good to leave knowing that Max is doing well. In fact this is probably the best he has been in a very long time. Perhaps we are finally getting some well deserved "down time". We can only hope....

Tuesday, December 6, 2011

It's All Good....

.....so far. Today we finished Day Two of our "Hopkins Holiday" and we have received only good news from the doctors! For the first time in a very, very long time everyone seems happy with Max's post-op status. Our G.I. doctor actually said he finds Max interesting (and who doesn't?) but he DOES NOT worry about him. I'll take that and run.

All in all it looks like we might be back to yearly visits to Charm City! Of course, it's the cardiac surgeon who has the last word on this and we don't see him until Thursday afternoon. Unfortunately, it wouldn't be the first time he has changed our plans, so I'm just cautiously optimistic at this point. But in our world any flavor of optimistic works!


The trip out was good if you overlook the 15 degrees in Denver and the fact that I got us horribly lost in the "hood" in Washington....what's a trip without a little excitement? When we finally arrived in Baltimore we were greeted by a great group of girls who had come to Children's House to serve dinner to the families. Below is a photo of Max with his girls.


Keep praying that the rest of our news is all good!



Max's Welcoming Committee



Praying Max doesn't check the blog....I sort of promised him I wouldn't post this "embarrassing" picture of him in his super-sized paper shorts snapped just before his appointment with his Orthopedic doctor.

Monday, December 5, 2011

Iron Chef

On Saturday, in the middle of the mayhem of preparing for Hopkins, Max was invited to be "pastry chef for the day" at The Phoenician, a very swank resort in Scottsdale. The task at hand? To help finish the largest gingerbread house in Arizona!


After watching the Food Network for years and years Max was certain he was up for the challenge and was sure to offer the Executive Chef and the Executive Pastry Chef a tip or two he has learned watching many episodes of "Iron Chef". Not too sure what they made of Max and his suggestions but everyone was gracious and provided all of us with a lovely morning.


It's not often that we get to rub elbows with the rich and famous!



Dressed for the Job

Hard at Work

Learning from a Pro....Executive Chef at The Phoenician

It Takes a Village to Build a Gingerbread House

Setting Up the Train

Finishing Touches


Satisfied with a Job Well Done


Friday, December 2, 2011

The Hike to Hopkins

Sunday’s the big day…the pilgrimage back to Baltimore will commence! I’d like to say that we’re packed and ready to go but alas that is not the case. One would think that having done this trip at least a dozen times I would have it down pat but somehow I do not. Perhaps I’m so good at it I no longer fret over the details, perhaps I’m just plain lazy and unmotivated, but the most likely cause is that I just don’t want to go!

There are several reasons for this: one, it’s December in Maryland which means cold and gray weather, two, the week is never anything more than a medical marathon running from appointment to appointment to appointment, and last, but most IMPORTANT is that I panic about receiving bad news. This past year has been so tumultuous I just don’t think we can handle much else so we’re asking everyone for prayers for only good news!

I’ll be updating all next week so feel free to check back in, have a great weekend!

Sunday, November 27, 2011

A Championship Season

Just a few pics from the Cardinals' Championship Season. What a joy it is for Max to have this wonderful opportunity to play, albeit at his own pace, a sport he loves so much with friends that he loves equally!


A little pre-game strategizing


Ready, set....


.....go!


Post goal celebration

Pass...


Running his "heart" out

Champs, on and off the field!


Hoping that everyone had a great Turkey Day and wishing you an even better week!

Wednesday, November 16, 2011

An Unexcused Absence

As of late there has been so much and yet so little going on that I just haven’t posted – no excuse really I just haven’t had a clear moment to think about things. Too much rattling around in my head I guess…..

My first priority has been getting us set for Hopkins. Although it feels like we just left I find myself in the middle of trying to hammer things out for our trip back the first week of December. This trip will be mostly post –op stuff (I can’t believe we are already six months out from that nightmare) but because we’re now up to more than seven specialists our week will be packed. It’s incredible to think that just four years ago we went to Hopkins to see one doctor, have one surgery, and be on our way. Since then we have learned so much about Max and his yet to be named syndrome that we are now seeing so many specialists it makes my head spin. Coordinating everything in one week seems like such an insurmountable feat, but thankfully everyone at Hopkins is so accommodating that somehow it all works out. We are fervently praying that everything will look so good that they’ll cut us loose for a bit and put us back on a once-a-year schedule. While I am counting on nothing, because Max is nothing if not surprising, it would be so nice logistically, financially, and emotionally to only have to make the trip once a year. Now I just have to convince the doctors that a summer schedule works much better for a bunch of thin blooded Arizonians!

In other news, Max is drawing to the end of another Fall football season. It has been especially sweet this time around to see him running down the field with less fatigue and difficulty. Thanks go out to Kids Playing for Kids for giving Max a chance to play and to Dr. Vricella, heart surgeon extraordinaire, for giving him the ability to play. Needless to say we have a lot to be thankful for this year!


As always, thanks so much for checking in on us!

Wednesday, October 19, 2011

Anger

Webster’s Dictionary defines “anger” as:

A strong passion or emotion of displeasure or antagonism, excited by a real or supposed injury or insult to one's self or others, or by the intent to do such injury.

Anger management experts define “anger” as:

Anger is defined as a strong feeling of displeasure or hostility and is a root cause of many problems, unless an effective form of anger management is used.

Today I am a very strong candidate for anger management classes. After hours and hours of dealing (read arguing) with United Healthcare over their coverage, or lack thereof, of Max’s most important cardiac drug I am absolutely fuming! The highlight of this exercise was when a call-center representative, probably making slightly over minimum wage, asked me why the doctors just didn’t change the medication to something else. I asked her when she had graduated from Medical School and thus felt qualified to suggest another drug. I don’t think that helped my case much but at that point I felt it was better than cursing at her.

And so yet another appeals process has begun. I wish that I had started a running count of these processes when Max was born, surely between his two insurances I have gone through hundreds of appeals. The beauty of it is that I always win, but it usually takes months and months of soaring anger levels and blood pressure values. I have told these companies on more than one occasion, “you can do what I’m asking for now or you can waste six months and dozens of hours of resource time and expenses and still do what I’m asking for, you choose.” Again, this doesn’t win me any popularity contests with insurance companies but it is an accurate representation of how these things go. It’s just a long, slow, painful dance that parents of chronically ill children know far too well and although we are familiar with this dance it still sucks all the life out of us each and every time. I’ve said it before and I’ll say it again, this is without a doubt the part I hate most about managing Max’s care. Ten years later it’s the same garbage over and over again, the only difference is I’m now 10 years older and I’ve grown weary, cranky, and angry…..

…..and thus my candidacy for anger management classes.

Friday, October 7, 2011

This and That....In Pictures

I realize that I have been SUPER bad about posting lately but the kids have so much going on with school, sports, and the ever present doctors' appointments that I can't tell if I'm coming or going! So in a feeble attempt to update everyone on the "goings on" at the Marangella Ranch, here's some pics of "Fall 2011".



What's fall without a little baseball? Are you checking out these seats RIGHT behind home plate? His smile pretty much sums it up....


Giving "knuckles" to Gonzo, one of his favorite baseball legends!


Max decided to introduce himself to the AZ Diamondback's President and other dignitaries......


....is it me or does this guy's face say, "Who the heck was that kid?"





The excitement of Junior Year Homecoming....for Ellie. Michele and I were dying, where did that girl in heels and a strapless dress come from?


Watching baseball play-offs and harassing his big sister.



One pretty girl wasn't enough for Max. So he decided to pose with Ellie and her friend Becca.

Saturday, September 17, 2011

Bye, Bye Coumadin!

It's official!! This week after hitting the three month post-op milestone and a GREAT appointment with Max's cardiologist he is no longer taking the dreaded blood thinner. No more constant blood draws, worrying about the resulting blood levels, and most importantly no more living in fear of a cut or bruise. We all feel like we've been liberated from what I have referred to these last months as the second phase of hell this valve replacement has been.

Coumadin is gone and Max's two most recent echo cardiograms show an incredible aortic valve repair, a high functioning heart, and very little if no leakage from his other valves. All things that seemed impossible three months ago as we sat in a pediatric intensive care unit with a child who refused to play by the "open-heart surgery recovery book". Once again in his own time and his own way Max has succeeded in surprising his parents and his doctors. Why do I ever doubt this kid?

Speaking of doctors I am overjoyed to report that we have FINALLY found a fantastic pediatric cardiologist in Phoenix. Another thing I thought impossible just three months ago (see my earlier post of June 29th). This doctor has been wonderful to work with, he called me several times a week to discuss Max's coumadin labs, sits with us through the entire echo and describes in detail everything he is seeing, and is incredible with Max. One of the things I admire most about Dr. Puntel is that he actually WANTS Hopkins opinion and instructions regarding Max's care, he ASKS for it! What I find most interesting about this collaborative spirit is that it's coming from a doctor who I would actually trust to make his own decisions about Max's care. That's something that hasn't happened in many, many years. Fingers crossed that Phoenix doesn't cause this man to run screaming from this city.....

Sunday, September 11, 2011

The Day That Changed Our Lives Forever

Ten years ago today I, like so many, remember exactly where I was when the Towers were hit. There is so much of that day that is seared into my memory, I relive it often with such clarity it still leaves me in tears.

It was very early morning here in Phoenix, Max was still hospitalized since his birth in May and was in fact scheduled for major surgery that day. I was a wreck because this surgery was different, it was going to give us a rather definitive answer regarding much of Max's future. Just before dawn the nurses "kicked us out" with orders to go home to sleep, take a shower, and come back ready to face the day's events. When we pulled out of the parking lot in downtown Phoenix the only "event" that had me terrorized was Max and his precarious situation. By the time we got home the phone was ringing frantically. With a four month old baby in the ICU a ringing phone is never a welcomed sound. As I ran to it I was praying for a wrong number or a family member who just couldn't remember time zones. It was my mother, sobbing, telling me to turn on the TV. As the picture came on I saw the second tower being hit. Tower #2 where my father had worked for much of his career, where he had missed the first World Trade Center attack years before because he had just been transferred to California. I remember gasping and falling back onto the bed, I'm a New Yorker and that was home. I had spent a lot of time in those buildings and heard stories from my father's coworkers about getting out in '92. The horror, the terror they had felt, the blackened hallways, the smoke....but this was worse I could clearly see that this was worse.

As I tried to comprehend what I was seeing I remember selfishly thinking of nothing other my own children. I screamed to Michele to get Ellie out of the room, at barely six years of age I did not want her to see the horrific scenes being shown. She was already overburdened by the months of stress we had been living since Max's birth and I worried that this might just be a breaking point for her, she had become a mini-adult in these last few months but in reality she was just small child.

My next thought was of my second child, laying in a crib miles away from me, probably being prepped and sedated for surgery. I panicked, I knew the country would be on high alert and I knew that meant no "elective" surgeries would be performed that day. I quickly hung up with my mother and called Max's nurse. I could hear sobbing in the background so it was obvious that everyone had heard or seen the news. I asked about Max's status and I was told that yes, they were told to hold open all operating rooms for possible casualties and there would be no blood supply for non-emergent patients.

I knew instinctively that we needed to get back to Max, so without our "ordered" rest or showers we got back in the car and headed to the hospital. Once there the surgeon came to Max's room to tell us that he had to go ahead with the surgery because the type of prep that had been done could not be repeated so he had gone to the hospital's board to ask for permission to perform the procedure, he was given a small supply of blood if it were to be needed.

The next thing we knew we were sitting in a very large surgical waiting room, a room meant to hold dozens of people and there the three of us sat alone, in complete silence. I kept telling myself that none of this was true, it was all just another one of the many bad dreams I had been having these last few months. Hours passed, three, four hours and we had no word at all from the OR, in a moment of sanity I realized that this was probably because there were no other surgeries being performed so the waiting room staff had been sent home. I found the phone that rings back to the OR, a nurse answered and told me she would call me right back with an update. I stood by that phone like an idiot for what seemed like forever when in fact the phone rang just moments later. She told me that Max was OK but the doctor had discovered rather serious issues with his intestines, they were barely a third of the length they should be and he couldn't be sure if they were or would ever function properly. For the second time that day I hung up a phone and collapsed into a sobbing heap.

It was at that precise moment I knew our lives would never, ever be the same. America would no longer have the same sense of tranquility and blind hope that no one could ever attack us. And my family would never have the same sense of peace and hope that Max would come out of all these many months unscathed. Both my country and my son were "broken" and in my complete sadness I was not sure either could ever be "fixed".

Ten years later, I am happy in God's blessings. He gave us back our son when everyone else told us to expect the worse, the unthinkable. He also gave all of us, as Americans, the ability to come together and to know that these horrible, black days made us nothing less than stronger. God, once again, "fixed" what was "broken".

Wednesday, September 7, 2011

Heaven and Hell All Wrapped Up into One Long Weekend!

After a long, hot, tumultuous summer the Marangella's decided to "hit the road" for the Holiday weekend. For the first time in a very long time we did NOTHING, absolutely NOTHING and what a luxury it was! We laid on the beach all day and slept all night, it was sheer heaven.

Heaven came to a screeching halt however when we noticed that Max's left foot was bright red and swollen. He had fallen off the treadmill earlier in the week (the skinniest member of the family seems to be the only one who actually uses the contraption) which resulted in a nasty cut. Our first reaction was concern about whether or not the cut would clot due to his Coumadin dose, we are happy to report that it did clot but not before a nasty infection set in. Long story short we came home and went straight to the ER, it seems we just CAN'T stay away from the place!




Wednesday, August 17, 2011

It's the Most Wonderful Time of the Year.....

....just ask Michele and he'll tell you how wonderful it is to have peace and quiet again! Ask me and I'll tell you that I'm back to the bane of my existence, pulling kids out of bed every morning by their hair and spending my evening hours screaming over and over again, "If you don't go finish your homework right this minute I'll......(fill in the blank)".

This year I have promised myself that I will keep a very positive attitude (in fact I'm trying this new credo with all aspects of my life with varying results but we can hold that topic for a later post) about Max's school situation. I'm always nervous the first weeks of a new school year as everyone settles in, especially with teachers who have Max in class for the first time. I'm no dummy, he can be a handful and I worry about that. Obviously after the summer we have had this is particularly true this year as Max has so many restrictions and a new, special list of "dos and don'ts". I imagine that if I find the list overwhelming it must be even more so for new teachers and school nurses will feel about it.

Having said all of this I have a little secret…..so far I am really pleased with everything. Max’s new teacher and school nurse seem great, truly concerned about him and his well-being, and dedicated to making this a great year for him. Hey, maybe this positive attitude thing is working!




First day of Junior Year -- how did that happen?



Ellie's traditional first day of school pose with her dog.



Not so sure about the Fifth Grade.....


First to class, guaranteed to not happen again for the rest of the year....



We can only hope this is to be a prophecy!

Monday, August 1, 2011

Medical Update

Yes, we’re still here. And, yes, I owe a very long overdue update but maybe no news is good news? (Written on Monday, July 25th …..)

OK, I have to admit that I started this post days ago but the phone started ringing and I found myself in the middle of another one of our “fire drills”. The first call was an extremely excited hematologist from Hopkins and the second was an equally excited cardiologist from Phoenix Children’s. The hysteria was based around the lab results for Max’s Coumadin level taken precisely 15 minutes earlier. It seems that his INR level (the number that indicates the blood’s clotting time) was critically high so the clinic immediately called both doctors. After talking to the doctors we realized that the types of numbers Max had were so high they were either a “false positive” (best case scenario) or a very possible bleeding risk (worst case scenario). At this point any fall, cut, or even scrap or bump could cause a life threatening bleed.

In typical fire drill fashion, Michele immediately flew out the door to have Max’s blood redrawn all the time praying that the results would indicate the best case scenario. But I think we all have a clear idea of how our luck runs, within a few minutes we knew it was not a false positive and all that remained to do was to decide if Max needed “reversal therapy” which would have meant a hospital admit or if we could just hold his Coumadin for a day or two and let things settle out on their own. Because Max showed no signs of bleeding, either externally or internally, and because we had since wrapped him in bubble wrap and duct taped him to the sofa in order to keep him still and safe (yes, I’m exaggerating no calls to Child Protective Services please), we were allowed to stay home, withhold the Coumadin for two days, and return on Saturday for a level check.

Saturday morning’s INR check revealed that Max’s blood levels were now just on the low side but no longer critical. Yet another fire drill comes to a safe and successful end. I left the hospital after the lab results came through and went directly to get my hair dyed, after the week we had I certainly must have sprouted an extra gray hair or two…..

Things have settled down again and the kids are getting ready to start school next week. We all feel like we’ve had no summer break whatsoever and the fact of the matter is we really didn’t. Between the month in Baltimore and the constant back and forth to doctor’s appointments, labs, and assorted other medical follies since we’ve been home there has been no down time for any of us.

The fun just never ends at the Marangella household……

Thursday, July 14, 2011

Mr. Max Goes All - Star


On Tuesday night, thanks to some very generous people, we had the extreme pleasure of attending the All - Star game here in Phoenix. I'm not sure who was more excited to go, Max or me, but I am certain that it will be a very special Mommy and Max memory for a long time to come.


So as promised here are some pics of Mr. Max at the game. Please be warned that because we did not have the official family photographer with us (Dad) these pictures were taken by amateurs (Max and me) with a crappy phone that neither of us knew how to work. In my case not only couldn't I work it but I couldn't see it either because I forgot my glasses at home!



Complete and utter satisfaction with his place in life, love it!



Batting Practice



Tuesday, July 12, 2011

All - Star Sunday

Thanks to Wendy, our favorite Child Life Specialist (and friend), at Phoenix Children's Hospital Max got another wish granted, tickets to All-Star Sunday and the All-Star game! I think these pictures give a great idea of just how thrilled Max is with the whole experience. Stay tuned for more pictures from tonight's game!




Trademark ear-to-ear smile



Sporting his special jersey, a gift from D-Backs player Willie Bloomquist


In the spirit of good game manship, Max poses with a few rival mascots




Tuesday, July 5, 2011

How we spent our holiday weekend....

....we did absolutely NOTHING! Perhaps it was the 118 degree weather or perhaps it was just the need to do nothing after 30 days of doing "something", either way it was neither glamorous or exciting. The only "big event" of the weekend was Max's long awaited return to his pool. Nearly six weeks after school let out, summer has finally begun at the Marangella house!




Tuesday afternoon postscript:


Evidently doing "nothing" is less than appealing to Max so early this morning he decided to go with the ever exciting nosebleed. Now it's not that Michele and I don't like a good fire drill but a dawn nosebleed on a kid tanked up on coumadin has an extra special sense of hysteria attached to it. As of now all seems OK and I would like to take this opportunity to thank Max for waiting until after midnight to instigate a trip to the hospital. Thanks Max, my offcial "out-of-the-hospital on the 4th of July" stats have improved to 3 for 10!