Liver transplant for Johnny
Donation protected
Johnny nació el 26 de abril de 2019. Después de dos días de su nacimiento nos fuimos a casa a pesar de que le había comentado a las enfermeras y al doctor pediatra que el bebe no había sentido dolor al pincharlo para un examen, ni tenía interés en comer. El llego a casa durmiendo, durante varias horas intentamos alimentarlo tanto por pecho como por botella y el no parecía interesado, hasta que detectamos un factor de alarma y regresamos con urgencia el hospital; el no podía abrir su boquita.En el hospital lo llevaron a una habitación de emergencias donde no podíamos pasar a verlo ni su papá ni yo. Cuando lo volvimos a ver el estaba expulsando espuma por la boca y su cuerpecito lleno de hematomas y sangre. El no podía siquiera responder ante el dolor, seguía sin llorar aun cuando lo habían llenado de pinchazos. Cuando preguntamos la causa de que tuviera tanta espuma en su boca el mismo médico pediatra que le había dado el alta me respondió que era normal que es el resultado de que el no podía abrir la boca, que el creía que era algo neurologico, e insinuó que el bebe se había caído o le habían dado un golpe en la cabeza.Pedimos transferencia para Nicklaus Children’s Hospital pero los paramédicos demoraron muchísimo en llegar, desde las 9pm no llegaron hasta las 2am. Enseguida que vieron al niño el jefe de los paramédicos se dio cuenta que El Niño estaba convulsionando y pidió autorización para ponerle una medicina en lo que llegábamos al hospital. Una vez llegamos le empezaron a hacer pruebas y a ponerle antibiótico y otras medicinas por prevención. Fue una noche larga e intensa. El bebe estaba entubado, tenía cables y líneas de acceso a las venas por todo el cuerpo y no sabíamos que era lo que pasaba con el. Hasta que los resultados de laboratorio arrojaron que tenía sus niveles de amonia en más de 1000. Lo sometieron a cirugía para poner un catéter en su yugular para poder hacerle diálisis con urgencia para sacar la amonia de su sangre lo más rápido posible, pues cada segundo que la tuviera tan alta tenía más posibilidad de perder su vida. Después de las diálisis el doctor nos llamó y nos comunicó que el bebe estaba tan crítico que no contaban con el, que nosotros como padres teníamos que preparamos para lo peor. Las horas y los días siguientes fueron muy intensos pero nunca perdimos la esperanza y nuestro pescadito siempre luchó por su vida. En este tiempo recibió varias transfusiones de sangre, plaquetas y plasma. Controlaron sus niveles de amonia y solo quedaba esperar a que el respondiera por sí mismo. Su presión bajo, también subió, hizo mucho pipí, luego ninguno, su cuerpecito se hinchó tanto que apenas lo podíamos ver y cada día pasaba por algo nuevo, pero no pedíamos la fe y toda su familia estaba a su lado no lo dejamos solo ni un solo momento. Y llego ese día. Llego el día en que escuchamos su llanto otra vez, donde volvió a abrir sus ojitos, a mover sus manitos, luego sus piecitos, donde volvimos a tenerlo otra vez. Como sus niveles de amonia estuvieron tan elevados y había tenido convulsiones le hicieron un MRI del cerebro. Los resultados arrojaron que Johnny tiene afectado el area motora y del habla. Llego luego de semanas de espera la confirmación de su diagnóstico el tenía OTC un desorden metabólico llamado ornitina transcarbamylase (otc deficiency) que es un trastorno en el ciclo de la urea. Un trastorno del ciclo de la urea (UCD) es una enfermedad rara que afecta aproximadamente a 1 de cada 35,000 nacimientos en los Estados Unidos. El subtipo de UCD por deficiencia de OTC es el más frecuente y se transmite con el cromosoma X a través de la madre, que podría desconocer que es portadora. El sigue una dieta baja en proteínas, consume suplementos de aminoácidos y toma medicina para controlar su nivel de amonia en sangre cada día. Su seguro no está cubriendo esa medicina que el tanto necesita Ravicti, la cual tiene un costo de 5000-6000 dólares por frasco y un frasco solo le alcanza para 15 días. Ahora el necesita un donador de hígado para curar su enfermedad y tener una mejor calidad de vida. Aunque después va a seguir tomando medicinas para suprimir el rechazo que pueda hacer su cuerpo a este órgano extraño que el va a llevar, que su costo también es bien elevado. Todo la ayuda que nos puedas dar va a ser para su salud y el costo de sus medicinas. Te agradecemos toda su familia por cualquier aporte que puedas hacer.
Johnny was born on April 26, 2019. After two days of his birth we went home even though he had commented to the nurses and the pediatrician that the baby had not felt pain when he was pricked for an exam, nor was he interested eating. He came home sleeping, for several hours we tried to feed him both by chest and by bottle and he did not seem interested, until we detected an alarm factor and returned urgently to the hospital; He couldn't open his mouth. In the hospital he was taken to an emergency room where we couldn't see him or his dad or me. When we saw him again he was blowing foam out of his mouth and his little body full of bruises and blood. He couldn't even respond to the pain, he still didn't cry even when they had filled him with punctures. When we asked why he had so much foam in his mouth the same pediatrician who had discharged him replied that it was normal that it is the result that he could not open his mouth, that he believed it was something neurological, and hinted that the baby had fallen or had a blow to the head. We requested a transfer to Nicklaus Children's Hospital but the paramedics took a long time to arrive, since 9pm they did not arrive until 2am. As soon as they saw the boy, the chief of the paramedics realized that El Niño was convulsing and asked for authorization to put a medicine on what we were getting to the hospital. Once we arrived, they started testing him and putting antibiotics and other medicines for prevention. It was a long and intense night. The baby was tubed, had wires and access lines to the veins all over his body and we didn't know what was going on with him. Until the laboratory results showed that he had his ammonia levels in more than 1000. He underwent surgery to put a catheter in his jugular to be able to do dialysis urgently to remove the ammonia from his blood as quickly as possible, because every second that he had it so high he had a better chance of losing his life. After the dialysis the doctor called us and told us that the baby was so critical that they did not have him, that we as parents had to prepare for the worst. The following hours and days were very intense but we never lost hope and our little fish always fought for his life. During this time he received several transfusions of blood, platelets and plasma. They controlled their ammonia levels and there was only waiting for him to answer for himself. His low pressure, also went up, made a lot of pee, then none, his little body swelled so much that we could barely see him and every day he went through something new, but we did not ask for faith and his whole family was by his side we did not leave him alone or just one moment And that day came. The day came when we heard his cry again, where he opened his eyes again, to move his little hands, then his little feet, where we had him again. Because his ammonia levels were so high and he had had seizures, he had an MRI of his brain. The results showed that Johnny has affected the motor and speech area. After weeks of waiting for confirmation of his diagnosis, OTC had a metabolic disorder called ornithine transcarbamylase (otc deficiency) that is a disorder in the urea cycle. A urea cycle disorder (UCD) is a rare disease that affects approximately 1 in 35,000 births in the United States. The subtype of UCD due to OTC deficiency is the most frequent and is transmitted with the X chromosome through the mother, who may not know that she is a carrier. He follows a low-protein diet, consumes amino acid supplements and takes medicine to control his blood ammonia level every day. Your insurance is not covering that medicine that Ravicti so much needs, which has a cost of $ 5,000-6,000 per bottle and only one bottle is enough for 15 days. Now he needs a liver donor to cure his illness and have a better quality of life. Although later he will continue taking medicines to suppress the rejection that his body can make to this foreign organ that he will carry, that its cost is also very high. All the help you can give us will be for your health and the cost of your medicines. We thank you all your family for any contribution you can make.
Johnny was born on April 26, 2019. After two days of his birth we went home even though he had commented to the nurses and the pediatrician that the baby had not felt pain when he was pricked for an exam, nor was he interested eating. He came home sleeping, for several hours we tried to feed him both by chest and by bottle and he did not seem interested, until we detected an alarm factor and returned urgently to the hospital; He couldn't open his mouth. In the hospital he was taken to an emergency room where we couldn't see him or his dad or me. When we saw him again he was blowing foam out of his mouth and his little body full of bruises and blood. He couldn't even respond to the pain, he still didn't cry even when they had filled him with punctures. When we asked why he had so much foam in his mouth the same pediatrician who had discharged him replied that it was normal that it is the result that he could not open his mouth, that he believed it was something neurological, and hinted that the baby had fallen or had a blow to the head. We requested a transfer to Nicklaus Children's Hospital but the paramedics took a long time to arrive, since 9pm they did not arrive until 2am. As soon as they saw the boy, the chief of the paramedics realized that El Niño was convulsing and asked for authorization to put a medicine on what we were getting to the hospital. Once we arrived, they started testing him and putting antibiotics and other medicines for prevention. It was a long and intense night. The baby was tubed, had wires and access lines to the veins all over his body and we didn't know what was going on with him. Until the laboratory results showed that he had his ammonia levels in more than 1000. He underwent surgery to put a catheter in his jugular to be able to do dialysis urgently to remove the ammonia from his blood as quickly as possible, because every second that he had it so high he had a better chance of losing his life. After the dialysis the doctor called us and told us that the baby was so critical that they did not have him, that we as parents had to prepare for the worst. The following hours and days were very intense but we never lost hope and our little fish always fought for his life. During this time he received several transfusions of blood, platelets and plasma. They controlled their ammonia levels and there was only waiting for him to answer for himself. His low pressure, also went up, made a lot of pee, then none, his little body swelled so much that we could barely see him and every day he went through something new, but we did not ask for faith and his whole family was by his side we did not leave him alone or just one moment And that day came. The day came when we heard his cry again, where he opened his eyes again, to move his little hands, then his little feet, where we had him again. Because his ammonia levels were so high and he had had seizures, he had an MRI of his brain. The results showed that Johnny has affected the motor and speech area. After weeks of waiting for confirmation of his diagnosis, OTC had a metabolic disorder called ornithine transcarbamylase (otc deficiency) that is a disorder in the urea cycle. A urea cycle disorder (UCD) is a rare disease that affects approximately 1 in 35,000 births in the United States. The subtype of UCD due to OTC deficiency is the most frequent and is transmitted with the X chromosome through the mother, who may not know that she is a carrier. He follows a low-protein diet, consumes amino acid supplements and takes medicine to control his blood ammonia level every day. Your insurance is not covering that medicine that Ravicti so much needs, which has a cost of $ 5,000-6,000 per bottle and only one bottle is enough for 15 days. Now he needs a liver donor to cure his illness and have a better quality of life. Although later he will continue taking medicines to suppress the rejection that his body can make to this foreign organ that he will carry, that its cost is also very high. All the help you can give us will be for your health and the cost of your medicines. We thank you all your family for any contribution you can make.
Organizer
Miriam Estrada
Organizer
Hialeah, FL
