{"id":24,"date":"2018-11-06T00:48:19","date_gmt":"2018-11-06T00:48:19","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2018\/11\/06\/2018-11-5-the-story-of-teddy\/"},"modified":"2025-10-14T07:06:18","modified_gmt":"2025-10-14T07:06:18","slug":"2018-11-5-la-historia-de-teddy","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2018\/11\/06\/2018-11-5-the-story-of-teddy\/","title":{"rendered":"La historia de Teddy"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p style=\"white-space: pre-wrap;\"><em>En octubre, RAWF proporcion\u00f3 a Teddy Marchione, un ni\u00f1o de Connecticut de dos a\u00f1os, un analizador de sangre port\u00e1til para tratar la diabetes ins\u00edpida que padece como consecuencia de un astrocitoma pilomixoide. Teddy est\u00e1 recibiendo quimioterapia. Molly, la madre de Teddy, comparte su historia. <\/em><\/p>\n<blockquote>\n<p style=\"white-space: pre-wrap;\">Teddy todav\u00eda no est\u00e1 fuera de peligro, pero tener el analizador de sangre nos ha permitido estabilizar sus niveles de sodio a un punto en el que no hab\u00edan estado desde antes de la cirug\u00eda y esto permite que su cerebro empiece a curarse de verdad.<\/p>\n<\/blockquote>\n<h3 style=\"white-space: pre-wrap;\">Contribuci\u00f3n de Molly Marchione<\/h3>\n<\/div>\n<div class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline          combination-animation-none          individual-animation-none          individual-text-animation-none\" data-test=\"image-block-inline-outer-wrapper\"><\/p>\n<figure class=\"sqs-block-image-figure              intrinsic\" style=\"max-width: 240px;\"><\/p>\n<div class=\"image-block-wrapper\" data-animation-role=\"image\">\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"position: relative; padding-bottom: 133.33334350585938%; overflow: hidden; -webkit-mask-image: -webkit-radial-gradient(white, black);\"><\/p>\n<p><noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1541465015333-OGTCWLD8T2CQ2TU2TW9S\/28336000_10156166656343454_677560152297141736_o.jpeg\" alt=\"La familia Marchione\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1541465015333-OGTCWLD8T2CQ2TU2TW9S\/28336000_10156166656343454_677560152297141736_o.jpeg\" alt=\"La familia Marchione\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1541465015333-OGTCWLD8T2CQ2TU2TW9S\/28336000_10156166656343454_677560152297141736_o.jpeg\" data-image-dimensions=\"240x320\" data-image-focal-point=\"0.5,0.5\" data-load=\"false\" data-image-id=\"5be0e3b7b8a0450dbb163932\" data-type=\"image\" \/><\/p>\n<\/div>\n<\/div><figcaption class=\"image-caption-wrapper\">\n<div class=\"image-caption\">\n<p>La familia Marchione<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/div>\n<div class=\"sqs-html-content\">\n<p style=\"white-space: pre-wrap;\">El 20 de julio de 2018, mi hijo de dos a\u00f1os, Teddy, asisti\u00f3 a un campamento de verano todo el d\u00eda y fue a una comida familiar por la noche. Durante la noche se quej\u00f3 de que \"me molesta\" y se se\u00f1al\u00f3 la parte posterior de la cabeza. Al d\u00eda siguiente vomit\u00f3 y lo llev\u00e9 al pediatra.<\/p>\n<p style=\"white-space: pre-wrap;\">El 21 de julio, me sent\u00e9 en la sala de urgencias de Yale y un m\u00e9dico me dijo que mi hijo ten\u00eda una gran masa en la base del cerebro. Como padre, nada puede prepararte para esta noticia. Mi dulce Teddy se someti\u00f3 a una operaci\u00f3n de diez horas el 23 de julio para extirpar una gran parte del tumor.<\/p>\n<p style=\"white-space: pre-wrap;\">Durante las 48 horas siguientes, mi marido y yo recibimos mucha informaci\u00f3n e hip\u00f3tesis. Un doctor dijo que basado en la localizaci\u00f3n del tumor, la gl\u00e1ndula pituitaria de Teddy puede ser \"enojada\" por algunos d\u00edas despu\u00e9s de la cirug\u00eda. Poco sab\u00eda yo que este enfado ser\u00eda lo que nos mantendr\u00eda en el hospital durante los siguientes 1,5 meses.<\/p>\n<p style=\"white-space: pre-wrap;\">Tras la operaci\u00f3n, Teddy desarroll\u00f3 una diabetes ins\u00edpida (DI) grave y tambi\u00e9n un mecanismo de la sed alterado. Algunos d\u00edas sus niveles de sodio eran alt\u00edsimos y otros ca\u00edan en picado. Durante uno de los d\u00edas con niveles bajos de sodio, Teddy entr\u00f3 en estado epil\u00e9ptico porque su cerebro estaba muy estresado por la anomal\u00eda electrol\u00edtica. Durante dos meses, trabajamos con varios endocrinos para intentar estabilizar sus niveles de sodio. Necesit\u00f3 dos transfusiones de sangre debido a todas las extracciones necesarias para comprobar sus niveles de sodio. Tambi\u00e9n necesit\u00f3 una intervenci\u00f3n quir\u00fargica para colocarle una sonda g\u00e1strica a trav\u00e9s de la pared del abdomen para poder administrarle agua, ya que no pod\u00eda beber lo suficiente para mantener sus niveles de sodio dentro de los valores normales. Nos ense\u00f1aron a medir los pa\u00f1ales y a calcular las entradas y salidas.<\/p>\n<p style=\"white-space: pre-wrap;\">Finalmente, el viernes 31 de agosto, nos dieron el alta del hospital con un plan de endocrinolog\u00eda que pensaban que funcionar\u00eda en el entorno dom\u00e9stico. Estaba en casa y una hora m\u00e1s tarde me llam\u00f3 el m\u00e9dico para informarme de que el sodio de Teddy estaba en un 123 cr\u00edtico y que ten\u00edamos que llevarlo a la UCI inmediatamente. Me sent\u00ed completamente desesperada.  Estaba en casa intentando que mi hijo bebiera m\u00e1s agua cuando m\u00e1s l\u00edquido podr\u00eda haberle bajado el sodio y haberle matado.<\/p>\n<\/div>\n<div class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline          combination-animation-none          individual-animation-none          individual-text-animation-none\" data-test=\"image-block-inline-outer-wrapper\"><\/p>\n<figure class=\"sqs-block-image-figure              intrinsic\" style=\"max-width: 240px;\"><\/p>\n<div class=\"image-block-wrapper\" data-animation-role=\"image\">\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"position: relative; padding-bottom: 125.41667175292969%; overflow: hidden; -webkit-mask-image: -webkit-radial-gradient(white, black);\"><\/p>\n<p><noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1541465055266-5OCX6FEHUI0PF3XBMHD6\/37843763_10156550185948454_3927632079046574080_o.jpeg\" alt=\"37843763_10156550185948454_3927632079046574080_o.jpeg\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1541465055266-5OCX6FEHUI0PF3XBMHD6\/37843763_10156550185948454_3927632079046574080_o.jpeg\" alt=\"37843763_10156550185948454_3927632079046574080_o.jpeg\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1541465055266-5OCX6FEHUI0PF3XBMHD6\/37843763_10156550185948454_3927632079046574080_o.jpeg\" data-image-dimensions=\"240x301\" data-image-focal-point=\"0.5,0.5\" data-load=\"false\" data-image-id=\"5be0e3df575d1f11c3a68a2a\" data-type=\"image\" \/><\/p>\n<\/div>\n<\/div>\n<\/figure>\n<\/div>\n<div class=\"sqs-html-content\">\n<p style=\"white-space: pre-wrap;\">Estuvimos ingresados otros 10 d\u00edas y me aterrorizaba la idea de volver a llevar a mi hijo a casa sin poder comprobar sus niveles de sodio. Fue entonces cuando una investigaci\u00f3n me llev\u00f3 a la Fundaci\u00f3n Raymond A. Wood. Encontrar esta fundaci\u00f3n fue la primera vez que creo que fui capaz de exhalar desde la cirug\u00eda de Teddy. La idea de ser capaz de controlar el nivel de sodio de Teddy en casa con una cantidad de sangre mucho menos requerida fue un cambio de juego. Present\u00e9 nuestra solicitud y recib\u00ed el aviso de que Teddy hab\u00eda sido aprobado para el analizador de sangre i-STAT.<\/p>\n<p style=\"white-space: pre-wrap;\">En las semanas anteriores a que tuvi\u00e9ramos el analizador de sangre, llevaba a Teddy al laboratorio a diario para que le sacaran sangre. Estos viajes eran tortuosos, ya que r\u00e1pidamente aprendi\u00f3 lo que significaban y sus venas empezaron a colapsarse por los frecuentes pinchazos. Lo \u00fanico que me ayudaba a superar estas visitas era saber que pronto podr\u00eda comprobar sus niveles en casa. Teddy todav\u00eda no est\u00e1 fuera de peligro, pero tener el analizador de sangre nos ha permitido estabilizar sus niveles de sodio a un punto en el que no hab\u00edan estado desde antes de la cirug\u00eda y esto permite que su cerebro realmente comience a sanar.<\/p>\n<p style=\"white-space: pre-wrap;\">Teddy est\u00e1 recibiendo quimioterapia mensualmente y el i-STAT nos da la tranquilidad de controlar sus niveles de sodio cuando el tratamiento lo descontrola todo.<\/p>\n<p style=\"white-space: pre-wrap;\">La Fundaci\u00f3n Raymond A. Wood ha sido una parte integral del \u00e9xito actual de mi hijo en casa. M\u00e1s que el equipo m\u00e9dico, la fundaci\u00f3n nos ha proporcionado una amplia formaci\u00f3n, apoyo emocional y esperanza. No s\u00e9 si mi dulce Teddy estar\u00eda en casa sin esta fundaci\u00f3n.<\/p>\n<p style=\"white-space: pre-wrap;\">____________<\/p>\n<p style=\"white-space: pre-wrap;\"><em>Nuestras oraciones est\u00e1n con Teddy y su familia mientras contin\u00faa su batalla. Por favor <\/em><a href=\"https:\/\/www.rawoodfoundation.org\/es\/hacer-un-donativo\/\"><em>considere hacer una donaci\u00f3n a la Fundaci\u00f3n Raymond A. Wood<\/em><\/a><em> para ayudarnos a seguir ayudando a ni\u00f1os como Teddy a luchar tras el diagn\u00f3stico de un tumor cerebral.<\/em><\/p>\n<p style=\"white-space: pre-wrap;\"><em>Un agradecimiento especial a la Sra. Shirley Ballard por su donaci\u00f3n en memoria del Sr. Billy Ballard.<\/em><\/p>\n<p style=\"white-space: pre-wrap;\">\n<\/div>","protected":false},"excerpt":{"rendered":"<p style=\"white-space: pre-wrap;\">El 21 de julio, me sent\u00e9 en la sala de urgencias de Yale y un m\u00e9dico me dijo que mi hijo ten\u00eda una gran masa en la base del cerebro. Como padre, nada puede prepararte para esta noticia. Mi dulce Teddy se someti\u00f3 a una operaci\u00f3n de diez horas el 23 de julio para extirpar una gran parte del tumor. <\/p>","protected":false},"author":6,"featured_media":25,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[21,1],"tags":[],"class_list":["post-24","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blood-analyzer-recipient","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>The Story of Teddy - Raymond A. 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