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!