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.

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.

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.....

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".

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!

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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!

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……