The last few months have be an struggle, however I know deep within me we will survive. Survive, what an amazing word. On November 12, 2000, I gave birth to an angel. He looked like a porcelain doll, he looked perfect in every way. He was full term and only 6 lbs and 2 oz. Small and left the hospital even smaller at 5lb 10oz. We went home and being the new Mom I would just stare at the most amazing sight I have even seen. I would just stare at him to be sure he was breathing. He was beginning to look what I considered to be olive, after all we are of Italian decent.. But the next day he was clearly yellow, so off to the pediatrician and he was diagnosed with Jaundice. We did what was needed and it corrected itself in a short time. Never the less, he was in my eyes perfect. Always small but perfect....
Let's fast track over years and reflect on the last few. He wanted for so long to play football, but he was so much smaller than the others boys, I feared he would get hurt. So he wanted to wrestle, and did. Wrestling in youth organizations is based on age/weight... so he was in with another kids that were comparable to him, and I was comforted by this. When he turned 10-11, he was still considerable smaller than other boys his age. He was small framed, about 60-65 lbs, just over all little, but I had always chalked it up to a short little Italian guy. It was starting to concern me, as he had now taken notice to it and was obviously starting to bother him. After all his was the smallest in his class and his little sister was now his height and creeping and always the older boy in the wrestling weight class. After alerting the pediatrician and he was not overly concerned and I let it go. But as the next years swept by on he was not gaining weight, I am talking 75 lbs and now his little sister towered over him. Moving into middle school, in 7th grade, he was 80 lbs and only 4 foot 8 inches, he is playing fall soccer and takes his is taking his wrestling physical at school and fails. How? He was small, but healthy, so I thought... He was always active and athletic...how? The physician contacts me at work to alert me he heard what could be a murmur but it sounded more valvular and suggested I take him to the pediatrician and get an ECHO and asks for the pediatrician's telephone number. Now, I am relatively calm but concerned. So I leave work, go get him from the soccer field just before the game was to start and be-line it to the pediatrician, who wants to see us at 3:30... um, the call came in a 2:10!
The pediatrician, who has seen my son his entire life, takes a close listen to him and also requests a med student to do the same, hears something and requests us to go to Children's Hospital for an EKG and ECHO. All I was thinking was, how could this be possible? There can't be anything wrong, he is healthy and we have always taken him to the doctors for check ups. Once at Children's he gets an ECHO and we are in the room with him. I am standing behind watching the ECHO being done and can't not believe what I am seeing. You see, I used to work for a Medical Corporation that supplied defibrillators and seeing ECHOs were not strange to me. I refused to believe what I was seeing.... or should I say, not seeing. The wings to his mitral valve was just not closing, it just wasn't there and worse where there should have been a wall in his called his atrial septum was a big black hole. I just keep thinking to myself, I obviously don't know what I am looking at and must be looking at this all wrong. Until the pediatrician tells us that he has Atrioventricular Septal Defect, a congenital heart defect, that he has had from birth... and this will require Open Heart Surgery. Can someone please tell me how this could have gone un-diagnosed for so long? He was 12 just about to turn 13! I believe the next days were a blur. I was a disaster, short tempered, crying and in complete denial.... he was not sick, he did not have a heart defect, he was 12 and no one ever said anything was wrong. But trying to keep it together for his benefit, as we were not going to tell him of his up-coming doom until we met with the Cardiologist and Surgeons, I found myself staring at him like I did when I first brought him home. Staring at him while he was sleeping, just to be sure he was breathing. The time between the diagnosis and surgery seem to be what was an eternity. He took the news rather well, and told the cardiologist sometimes when he ran or was wrestling he was so tired he felt like his heart was empty. Um, my sweet boy, it was. He was pretty fearless and kept that way up until the surgery. You see I promised him my face would be the last thing he would see before he went under and the first when he opened his eyes... keeping to my promise, I packed my bags for his hospital stay... cause if he was staying, so was I. Everyone was there. His Dad and Jeremy, his sisters, grandparents, aunts and uncles and his biggest fan, me. I got into the gown, hat and shoes and went to the operating room with him. He got up onto the gurney and the mask covered his face as he stared so deeply into my eyes with a fear I never saw him have before, as I told him he would be fine and I would see him soon he welled up with tears and drifted away to sleep. This is when I lost it. I knew he was in amazing hands, I knew they would fix his heart, but I also knew him to be perfect for 13 years and I knew that in order to fix his heart, they needed to cut open his chest, saw threw his bones and stop his heart. Everyone knows the potential complications of a surgery.... this was extreme.
We were there when he woke up in recovery CICU. He opened his eyes just for a moment and as promised I was there starring back. I was the worst and best day of my life. The surgeon, said he did well, they were able to fix the mitral valve cleft and sewed it together leaving only a small leak and were able to completely close the large hole in his wall. He was in and out of it for the day of the surgery. He looked frail and sickly with the great big incision down his chest. He never looked sick...and now was staring at him wondering how I missed it. How I did I let him go so long with this problem and not know? I didn't want to leave his side, but he must have had 20 people there who wanted to see him too, so I told him I was going to walk out and let some others come in to visit him, since were were only able to have 2 people visiting in the CICU at a time. And his response was, " ok, I will call you if I need you" and mine to him, " how honey?" since he did not have a phone and really could not move even if he did.... and he said, " I will say, Mom" ...
It has been just over a month since his corrective surgery. I am please to say he is doing amazing. As per the cardiologist, his heart functions are great, better now then after the surgery. He is still on some medication and we are hoping that it will only be for about 6 more months. He does have some limitations but everyday he pushes them. I have since become involved with Children's Hospital Heart Auxiliary. Jeremy and I have started a foundation to help promote awareness and funding for children and their families who suffer from a CHD and give back to the children at Childrens Hospital. We will be doing the Congenital Heart Walk in June. Our own fundraiser in the Spring and working with the Heart Auxiliary on the benefit concert and wine dinner in the Summer. Earlier this year I had requested from our local municipalities and the State that they proclaim the week of February 7-14th as Congenital Heart Defect week. Today we heard from our State Senators office at the Capital and they will be joining with the our State House Rep and the Governor will be doing a joint Proclamation for the week of February 7-14th as Congenital Heart Defect week and would like my son to be there so they can present it to him on behalf of our states children with CHD. This is a great honor. My son, who battled threw his entire life fighting a disease he didn't know he had, battled threw open heart surgery and less than two months later is being presented with a proclamation for CHD. We are new on the CHD front and we are here to stay and nothing will get in his or our way. From this day forward, he will stand tall, scar and all and be the face of Congenital Heart Defects.
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