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| This was Noah at 13 months old listening to music and trying to create a song. |
Monday, February 7, 2011
Everyday Gets Easier ( life after the diagnosis)
It's Saturday morning. The time most people look forward to relaxing and catching up on sleep. 6:00am the alarm goes off. I wish I could snooze but I know my baby needs me. Sound asleep I walk into his room. Sweet baby sleeping without a care in the world. I have to give him his injection and beta blocker. Most of the time he stays asleep and does not even allow it to effect him. Other days it is hard watching his little facial expression as i inject him. He is a really good sleeper for the most part. 2:00pm, time for his second dose of bate blocker. That particular medication is not so bad. It has a grape taste and it is really sweet. Usually after he takes that medications, it makes him sneeze. I am not sure why it has that reaction on him. Around five or six o'clock I give him 1 baby aspirin ,81 mg.With all the medication Noah takes on a daily basis, some how does not manage to keep him down. Doctors have told me that with his condition expect him to set back a bit. They advise me that due to the lack of oxygen and blood flow through his arteries, he may not be as playful and active as your normal 3 year old. That was far from the truth. He is so energetic, playful, talkative, intelligent, outgoing, observant, and has an ear for music. He is very opinionated. I still monitor while he is playing and becoming active. I make sure he takes breaks and is very hydrated. The afternoon dose is not so easy. 6:00pm Noah gets his second shot. This time, he is very alert and aware of what is about to happen. There was a point where I was able to inject him without an issue. I guess, just like everything else, it gets old. I mean, who will ever get use to being injected twice a day. These days Noah puts up a fight to receive the second injection of the day. Sometime he says things like, " mama, I don't want to get a shot", and other time he tells me"I'm not your friend, I'm mad at you". That broke my heart when I first heard that. No parent wants to be the villain. I know at times he is just tired of having to go through this every single day. I do not blame him. I want this to be over just as bad as he does. 8:00pm is the final dose of the bate blocker. That completes a day in the life of Noah's daily medication or should I say, the night is coming to a rest on till 6:00am the next day. It was very hard at the beginning. Since Noah has been dealing with this since thirteen months old, this has become a life style for him and everyone around him. He knows he has to take his medication to keep him stable. I tell him "God made you special baby , because he loves you." He just smiles back at me.
That is a day in my life to keep Noah stable. We continue cardiology check-ups every 3 months. Running all sorts of test like EKG, echo, blood, work, and heart monitor halter. Just this pass December 2010, we received amazing news that the aneurysms on his left coronary arteries have gone down a bit. That was a great way to end the year. Doctors advise it is best to keep Noah on the aggressive treatment. His body is too weak and not mature enough to under go surgery with a good outcome. We hope that as his body grows, the aneurysms will continue to reduce in size. Not totally excluding surgery out of the picture, but having the outcome of surgery and recovery looking brighter and brighter. On till then, Noah is adapted to his life style. It is the only one he has ever known. I keep greasy foods to a minimal and caffeine out of the equation since they contradict with his medication. I thank God that he is a hyper little boy, and not effected by his illness. The fact that he keeps going, keeps me going as well. It does get easier. I look at my boy as a walking miracle. That alone keeps me fighting!!!!
Saturday, January 29, 2011
TIME IS OF THE ESSENCE !!!
I am a 25 year old mother to Noah Toledo, who is 3 years old. I was over joy when I discovered that I was expecting. Despite the fact that I was young and not prepared I excepted it because it is a blessing. I was 22 when I gave birth to a healthy 7lbs 0.4 oz baby boy natural child birth. Little did I know all the joy that filled my heart would be shattered on October 20, 2008. Its every parent’s worst nightmare. I woke up to discover that my healthy baby had a fever that hit 105.0 and a rash on the extremities ( from his neck to his lower abdomen ) of his body. His eyes were blood shot red and had conjunctivitis coming out of his eyes ( which is a puss ). I knew as a mother that something was not right with my baby. That was not your normal looking rash but I didn’t want to face the fact there was something wrong with my baby or the fact that I would be judge as a first time mother. I didn’t want to take him to daycare because I knew he was too weak and I wanted to make sure that he was kept a close eye on. So I dropped him off with his father. I told him should he get worse please call me. I Gave him Tylenol and said to check his fever and make sure it goes down. Just an hour went by and I received a call that the baby was getting worse and his fever would not go down. I left work and picked him up at his father’s house. I noticed the rash had spread all over his entire body. I quickly rushed him to Miami Children’s hospital.
They started him on an IV. The emergency doctor asked me all sorts of questions like "did I use a different detergent? Is he allergic to anything? Did I feed him something then I usually do"? I knew where she was headed and I told her “ with all due respect this is not an allergic reaction “ . This rash is totally different then your normal rash. She was going to discharge us and I said “ no I want a second opinion ” . several RN’S came to see if it was measles or chicken pox but no one knew what it really was. This is when Dr.Cotilla from infectious disease came in and started to exam Noah. He saw that he had this rare rash, swollen hands and feet of almost a purple color as if lack of oxygen and blood were not flowing to the hands and feet. Fever of 105.0, blood shot red eyes, conjunctivitis, minor swollen lymphoid, and the strawberry tongue .
He said that Noah was going to be admitted. He then looked at us and said “ I’m most certain that we are dealing with Kawasaki Disease and you guys are not going anywhere ” . The first thing I did was Google what he was saying to understand what was it that my baby was going through. He told us how in Kawasaki’s Disease it is important that within the first 10 days that you begin this treatment called IVIG also known as gamma globulin. They started it that same day on 10/20/08. When I first brought him in to MCH through the emergency room . Doctor’s noticed that the first dose of IVIG did nothing to him so they started a second dose of IVIG. Also they began giving him baby aspirin 81mg a day. Then we noticed it decreased the rash on the extremities of his body but every other symptom remained. The doctor’s then advise me that they were going to start him on steroids. They began the steroids treatment and when they did one of their numerous blood work they noticed that his hemoglobin level was at a 6 and it should had been at 12. They advise me that he would need a blood transfusion. He was then rushed to PICU because he became tachycardia ( heart rate was really fast in the 210’s and would drop to 170’s) and received the blood transfusion there as well. He received a 2nd dose of steroids in PICU as well. We noticed that some of the rash was decreasing. Noah was still suffering from major joint pain and high fever. Doctor’s started to question whether he might have Leukemia or Juvenal rheumatoid arthritis. I was at a loss for words. I asked God “ why him, please spare him and give it to me “. They still noticed that he had fever of 103-105, what appeared to look like stains from the rash and peeling on his body began along with crack lips. Dr Rivas-Chacon began another type of treatment call Remicaid. Noah received 2 dose of that treatment. Finally on 11/14/08 I was able to go home and stay home. That entire journey caused Noah to fall back. He was walking before all this happened to him and now I had to put him back on the walker for therapy so that he can walk again. I was sent home on Prednisone ( oral steroid ) and aspirin to take extra precaution on the long term effects that is caused by Kawasaki Disease. An echo cardiogram ( ultrasound of the heart ) and an EKG ( test to show how the heart is beating ) was performed on 11/14/08 before he was released from the hospital and everything look great. Then on 01/16/09 he had another echo and EKG .
This is when I received the horrible news that 5 or 6 giant aneurysm had formed in both of his left and right arteries of his heart. One aneurysm measured larger than his aorta. I was terrified. My baby was only 1 year and 5 months old at that time. I didn’t want to lose him. The cardiologist DR.Z at the time placed Noah on one baby aspirin 81mg a day, and Coumadin (anticoagulant / blood thinner ). Coumadin is a really harsh anticoagulant in which the levels of your blood have to be monitored by a machine. I had a hard time getting the machine delivered to my house and I started to noticed that my son’s tongue would start to bleed just out of nowhere and his hair was falling off. He would also start to itch a lot on his head. I would keep calling the cardiologist but didn’t get a response back till almost a week and he said that those were common symptoms of that drug that the baby was on. He changed the baby to plavixs ( which is another anticoagulant ) but it’s used for adults. I felt that my baby was not receiving the correct dose because I had to cut the pill in four, dilute it in 5ml of water and only give him 3ml. It wasn’t till I had a Dr. appointment and the intern told me that the baby was having bad side effects from the Coumadin. I was upset because as a first time mother you trust these Doctor’s with your children’s lives. That is when I realized I have to believe in what I feel and most important seek a second opinion. Needless to say I dropped that Doctor in a heartbeat and found a wonderful pediatric cardiologist named Dr. Madeleen Mas located in Baptist Hospital in Miami Fl. On 08/07/09 my son had a cardiac cath performed to have an accurate idea as to which step to take next. Currently my son is on lovenox ( inject able anticoagulant) every 12 hours, propanalol, 3 times a day (batea blocker to coat the walls of the arties so that further damage is not caused) and 1 baby aspirin 81mg a day. Doctor Mas keeps in constant contact with Dr. Jane New burger in Children’s Boston Hospital who I have researched and is very knowledgeable at improving the diagnosis, treatment, and outcome of children with Kawasaki Disease and to minimize neurological problems that may occur after surgery for congenital heart disease. I had to go to Boston to run several test on Noah. This is when we discovered he had suffered a silent heart attack. By the miracle of God, his body created its own bypass. The reason why heart disease is the number one killer in children is because their bodies are not developed enough to create a re-route, but my son's heart did. That has to mean something. I began to have a whole new outlook on his recovery. I have read up on a lot of other parents stories and a lot of the stories don’t state the treatment that they are doing at home. I feel it’s important that I share my story because my son's case is really rare. It has been 2 years and now is when I’m able to help other parents that may be going through the same thing at this very moment or is searching for answers just like I have been. But mostly because I read the story of May Aldrin and it broke my heart. I pray to God everyday that I wake up from this never ending nightmare, and after reading about her heartbreaking story I realized that I need to go nationwide if I have to. I need to cure my son most importantly and help any parent out there that may be going through the same thing. My doctor has even mentioned that there may be a possibility that I may even have to go to Boston if that will be the best treatment for my son. Today Noah is a three year old active boy. If you don’t know me and see me walking with my son, you would never imagine the pain and suffering my son and everyone around me has to endure. He still remains with his 6 giant aneurysm and all the daily medication to keep him stable. What gets me through the day is seeing how he is such a sick boy, but you would never know. So full of energy, so full of life.
I have became such a strong person in dealing with the life changing journey. I have sent this letter to the Kawasaki Disease Foundation, to Oprah, Dr. Oz, the t.v show Doctor's, and any where and every where. I will not give up because my son deserves a normal life. Thank you to everyone that took the time to read my continuous journey and to learn about Kawasaki disease. And to you other parents out there going through the same thing, you are not alone. Words of advice, believe in yourself, be positive, seek a second opinion, and believe in him most of all ( GOD !!)
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| This was Noah on 10/20/2008 when he 1st walked into the ER. |
They started him on an IV. The emergency doctor asked me all sorts of questions like "did I use a different detergent? Is he allergic to anything? Did I feed him something then I usually do"? I knew where she was headed and I told her “ with all due respect this is not an allergic reaction “ . This rash is totally different then your normal rash. She was going to discharge us and I said “ no I want a second opinion ” . several RN’S came to see if it was measles or chicken pox but no one knew what it really was. This is when Dr.Cotilla from infectious disease came in and started to exam Noah. He saw that he had this rare rash, swollen hands and feet of almost a purple color as if lack of oxygen and blood were not flowing to the hands and feet. Fever of 105.0, blood shot red eyes, conjunctivitis, minor swollen lymphoid, and the strawberry tongue .
 |
| In this picture Noah had 105 fever. Doctors advise to remove his clothes and apply wet compress on his head and armpits to try and reduce the fever. |
He said that Noah was going to be admitted. He then looked at us and said “ I’m most certain that we are dealing with Kawasaki Disease and you guys are not going anywhere ” . The first thing I did was Google what he was saying to understand what was it that my baby was going through. He told us how in Kawasaki’s Disease it is important that within the first 10 days that you begin this treatment called IVIG also known as gamma globulin. They started it that same day on 10/20/08. When I first brought him in to MCH through the emergency room . Doctor’s noticed that the first dose of IVIG did nothing to him so they started a second dose of IVIG. Also they began giving him baby aspirin 81mg a day. Then we noticed it decreased the rash on the extremities of his body but every other symptom remained. The doctor’s then advise me that they were going to start him on steroids. They began the steroids treatment and when they did one of their numerous blood work they noticed that his hemoglobin level was at a 6 and it should had been at 12. They advise me that he would need a blood transfusion. He was then rushed to PICU because he became tachycardia ( heart rate was really fast in the 210’s and would drop to 170’s) and received the blood transfusion there as well. He received a 2nd dose of steroids in PICU as well. We noticed that some of the rash was decreasing. Noah was still suffering from major joint pain and high fever. Doctor’s started to question whether he might have Leukemia or Juvenal rheumatoid arthritis. I was at a loss for words. I asked God “ why him, please spare him and give it to me “. They still noticed that he had fever of 103-105, what appeared to look like stains from the rash and peeling on his body began along with crack lips. Dr Rivas-Chacon began another type of treatment call Remicaid. Noah received 2 dose of that treatment. Finally on 11/14/08 I was able to go home and stay home. That entire journey caused Noah to fall back. He was walking before all this happened to him and now I had to put him back on the walker for therapy so that he can walk again. I was sent home on Prednisone ( oral steroid ) and aspirin to take extra precaution on the long term effects that is caused by Kawasaki Disease. An echo cardiogram ( ultrasound of the heart ) and an EKG ( test to show how the heart is beating ) was performed on 11/14/08 before he was released from the hospital and everything look great. Then on 01/16/09 he had another echo and EKG .
 | |
| Noah getting EKG |
This is when I received the horrible news that 5 or 6 giant aneurysm had formed in both of his left and right arteries of his heart. One aneurysm measured larger than his aorta. I was terrified. My baby was only 1 year and 5 months old at that time. I didn’t want to lose him. The cardiologist DR.Z at the time placed Noah on one baby aspirin 81mg a day, and Coumadin (anticoagulant / blood thinner ). Coumadin is a really harsh anticoagulant in which the levels of your blood have to be monitored by a machine. I had a hard time getting the machine delivered to my house and I started to noticed that my son’s tongue would start to bleed just out of nowhere and his hair was falling off. He would also start to itch a lot on his head. I would keep calling the cardiologist but didn’t get a response back till almost a week and he said that those were common symptoms of that drug that the baby was on. He changed the baby to plavixs ( which is another anticoagulant ) but it’s used for adults. I felt that my baby was not receiving the correct dose because I had to cut the pill in four, dilute it in 5ml of water and only give him 3ml. It wasn’t till I had a Dr. appointment and the intern told me that the baby was having bad side effects from the Coumadin. I was upset because as a first time mother you trust these Doctor’s with your children’s lives. That is when I realized I have to believe in what I feel and most important seek a second opinion. Needless to say I dropped that Doctor in a heartbeat and found a wonderful pediatric cardiologist named Dr. Madeleen Mas located in Baptist Hospital in Miami Fl. On 08/07/09 my son had a cardiac cath performed to have an accurate idea as to which step to take next. Currently my son is on lovenox ( inject able anticoagulant) every 12 hours, propanalol, 3 times a day (batea blocker to coat the walls of the arties so that further damage is not caused) and 1 baby aspirin 81mg a day. Doctor Mas keeps in constant contact with Dr. Jane New burger in Children’s Boston Hospital who I have researched and is very knowledgeable at improving the diagnosis, treatment, and outcome of children with Kawasaki Disease and to minimize neurological problems that may occur after surgery for congenital heart disease. I had to go to Boston to run several test on Noah. This is when we discovered he had suffered a silent heart attack. By the miracle of God, his body created its own bypass. The reason why heart disease is the number one killer in children is because their bodies are not developed enough to create a re-route, but my son's heart did. That has to mean something. I began to have a whole new outlook on his recovery. I have read up on a lot of other parents stories and a lot of the stories don’t state the treatment that they are doing at home. I feel it’s important that I share my story because my son's case is really rare. It has been 2 years and now is when I’m able to help other parents that may be going through the same thing at this very moment or is searching for answers just like I have been. But mostly because I read the story of May Aldrin and it broke my heart. I pray to God everyday that I wake up from this never ending nightmare, and after reading about her heartbreaking story I realized that I need to go nationwide if I have to. I need to cure my son most importantly and help any parent out there that may be going through the same thing. My doctor has even mentioned that there may be a possibility that I may even have to go to Boston if that will be the best treatment for my son. Today Noah is a three year old active boy. If you don’t know me and see me walking with my son, you would never imagine the pain and suffering my son and everyone around me has to endure. He still remains with his 6 giant aneurysm and all the daily medication to keep him stable. What gets me through the day is seeing how he is such a sick boy, but you would never know. So full of energy, so full of life.
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| This was Noah turning 3 |
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| Noah with his new hair cut |
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