Thursday, October 19, 2006

My son's story starts like others, at birth. He was two days old when I took him home from the hospital and eighteen months old when he was legally adopted as mine. Both were the happiest days I ever experienced. Of course, he was mine before he was born as I used to talk to him in my car and go to all Dr's visits to see him in the sonograms. Then hours after his birth, I couldn't decide between two names and when I said them to him he moved his head to look me straight in the eyes at the sound of Noah.

My, was he a challenge! He had colic and never slept well. He was very determined and independent. I was always on my toes. His first word was "ball" at seven months, he crawled at 8 months, and walked at 9 months. That's why at 2 years old in August 2001, he seemed to be limping, I knew something was wrong. He sat in my lap for hours. An X-ray showed nothing wrong. It seemed to go away but then a couple weeks later he limped again. Pediatrician again said nothing was wrong, maybe just a virus that manifested itself in his joints and to give him Tylenol. Again, it seemed to go away.

In September 2001, Noah was sleeping and he seemed to be burning up. I tried to take his temperature but he awoke and suddenly he cooled off. There was no fever. This happened that whole Labor Day weekend on and off. Finally, I knew this was strange and took him to Urgent Care. The Dr. on call there said she noticed a heart murmur and that I needed to get him to Children's Hospital for further evaluation. I took him right there. The emergency room doctor took a blood test and called Cardiology. The fellow on that weekend listened to the murmur and stated that it seemed insignificant and that some children get murmurs that they outgrow. So, again, nothing to worry about. Bring him back in two weeks for a follow up with Cardiology.. .

I could not get an appointment with Cardiology until 4 weeks later but they assured me this would be fine. Now, back home, everything seemed back to normal. Until I received a phone call from the emergency room Dr. stating that Noah's blood culture came back with something in it and he needed to get a shot of antibiotic from his pediatrician right away. The Pediatrician said that he did not look sick and did not want to submit him to a shot so put him on amoxicillin for ten days. Noah seemed to be back on track again until October when he started to have the "weird" fevers again. One more time, the Pediatrician stated that nothing seemed to be significant but make sure I did not miss the Cardiology follow up appointment that was coming up in two days.

The follow up Cardiology appointment started everything rolling. The Cardiologist stated that Noah's heart murmur had gotten significantly worse, not better. They hospitalized him for several days to do tests. Also, cardiology had never received a blood culture report from emergency room so they knew nothing about this factor (First incident of bad communication). They did their own blood test and found strep bovine bacteria in his blood. This is the bacteria that we all have in our mouths but our bodies fight it off, Noah's for some reason did not. Dr's questions were, "did he ever go to the dentist" "did he ever have heart issues before this"? The answer was "no" to everything. We were thrown into a world I knew nothing about. I did not know that this type of bacteria if in the blood stream goes to the heart and causes heart valve damage, but that is exactly what it did. Thoughts circled my mind. How did this happen? Was it when he fell and got a bloody lip? Was it when he ate some dog food that one time? What did I do wrong? My God My Baby-why couldn't I have protected him from this!

After much reassurance that there was nothing I could have done, it was just a freak thing that happened (although several Dr's thought there had to have been something going on with his heart beforehand to have gone directly there so quickly) and the fact that his birth mother kept asking me if I had ever gotten Noah's heart checked because the birth father was telling her that he and his brother had some kind of heart problem when they were younger where they couldn't play football or any high contact sports because if they got hit in the chest they could die from it). Unfortunately, investigations into this never materialized into any further information.

Noah started a regimen of three antibiotics for six weeks given on a strict schedule through a pic line in his upper arm. The cultures came up clear after three weeks but his valve was beyond repair. They needed to do open heart surgery to replace the aortic valve. There was a procedure called a Ross where they take a good valve (pulmonary in Noah's case as his mitral was leaking also) and put it on the aorta then replace the pulmonary with an adult human valve cut to his size. Of course, the human valve since it is not of his body would not grow so would need to be replaced at some point-this could be anywhere from two to sixteen years down the road.

The surgery was successful and Noah stayed a little longer in the hospital than I had expected but who knows at this point what to expect. On a Sat. at 10:30pm, Noah was on the step down floor in his hospital crib receiving his antibiotics when a young woman walked in. She said "you do not know me and this is going to seem strange, but I was sent her by God to give you a message". I thought maybe she had the wrong room but she assured me it was for us, a single mom with a 2 year old named Noah. She put a fist full of money in my hand and said God told her I was in need (and I was, I had just started a new job and had to borrow my vacation time in advance and take a week without pay but how did she know this)? She went on.. ...she said "I was driving in my car when I heard God speaking to me. He told me I had to help you with this money and to let you know that he hears your prayers and he is with you and your son", she said "I am a single mom myself and I have a hard time parting with this money but it is not from me it is from God. I have my daughter, who is waiting right outside with her friends (she is having a sleepover tonight) so I loaded them all in the car and came here after I tried get out of it. But God wouldn't let me not come. So, just know that he is with you." Now in tears, I tried to give her back the money but she wouldn't take it. I asked who she was but she said that wasn't important. She left with three little girls in pajamas. I truly believe she was one of God's human angels and I felt His presence surrounding us.

Now, Noah is six years old. He has leakage at a moderate level at his pulmonary valve and mild at the mitral valve, but has no health restrictions and doesn't take medication. He has an echo once a year. He plays soccer, T -ball, basketball and is very energetic, this has never changed. Sometimes I have days where I get anxious from not knowing how this all happened, how did a bacteria get in his blood, could it happen again, is his cold a sign of something worse? ,,' "but everyday I thank God for the gift of this little boy who has changed so many lives and taught me how strong love and faith can be.

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