Day 26 in Hospital/Day 23 since surgery/Day 8 since Traqueotomy; Dia 26 en el Hospital/Dia 23 desde cirugia/Dia 8 desde la traqueostomia

The Latest: I had a wonderful weekend with the kids at home....very normal...Saturday chores, Sunday church, a soccer match (which my team lost:-(....but normal felt so wonderful! Victor is getting tired, but I think having is wife back to share the yellow metal bench with him has perked him up:-) Truly a wife and mother goes where her hubby and kids need her to be! (I learned that one from my Mom!) As for Danny, I only got to see him for 10 minutes in the entire day yesterday! Boo hoo! He was soooooo excited when I walked into the Cardiac Intensive Care Unit (CICU)! His little lips just mouthed "Mama, Mama" over and over again! He is in good spirits and we just pray he can be patient and persevere! We are in a definite holding pattern....which the Lord has confirmed over and over in the last few days as every single time I open the Bible, a devotional book, whatever....the verses always deal with waiting on the Lord!

Ventilator update: Danny lasted over 8 hours off the vent yesterday! Praise Jesus! They keep him on the vent at night so that he can rest and not have to work so hard all the time! They hope that he lasts the entire day today....12 hours or so! Let's pray him through it!

Heart update: He continues to be connected to the external pacemaker, but it is no longer on the constant setting...it is on a different setting where it only kicks in if his heart rate drops below 68. As of last night it hadn't kicked in for hours...and he is maintaining his own heart around 90 beats a minutes...perfect!

Nutrition: They believe that Danny's lack of being able to breathe on his own is due to exhaustion caused by malnutrition. Any of you who have ever seen Danny eat know that his malnutrition was not from a lack of food intake!:-) Dr. Palacios told us yesterday, which I already suspected, is that, due to his heart condition, although Danny ate and ate at home, his body was not able to fully use the nutrients. Right now, he continues on a nutritional feed via IV and his special formula through the breathing tube in his nose. They are giving him about 1000 calories a day. They would like to give him more, but when they up the amount of formula, then the drainage from his right lung increases, which is due to the chylotorax condition he developed after surgery, but the drainage isn't good. He was on a medication for the chylotorax, but they took him off of it because that med may have been contributing to his heart arrhythmia. So, they are debating how to handle the nutrition: put him back on the med so he can eat more, which he needs, but which may cause more heart arrhythima, or keep him off the med, but have to be more patient and slow-going at increasing his nutritional intake. May the Lord give them wisdom and may he heal the chylotorax, Daniel's inability to absorb proteins and lipids. The chylotorax is "temporary" (that word means something very different in this situation than the way I have defined it my whole life), but Danny will have to always live on a low-fat, low-protein diet.

I am at Ricardo and Susana's apartment, where I slept last night. Victor joined me for breakfast, but now I can hear him softly snoring while I work on the computer...maybe I should keep working...or just sneak out and go to the hospital?  Love you all and thank you for your prayers!

You can do it, Danny!  Tu puedes, Daniel!

Lo mas recien: Pase un fin de semana maravilloso con los ninos...muy normal con quehaceres el sabado y a la iglesia el domingo, pero normal se sintio increible! Victor se esta cansando ya, pero el tener a su bella esposa  a su lado en nuestro bank amarillo le ha dado nuevas fuerzas (creo!). Verdaderamente una esposa y madre esta donde su esposo y sus hijos la necesitan (Gracias, Mama, por ensenarme eso!)

En cuanto a Daniel, solo lo pude ver unos 10 minutos en todo el dia de ayer! Que triste! Pero, se puso muy emocionado al verme y sus labios movian diciendo "Mama, mama" muchas veces (aunque sigue sin voz.) El estaba de buen humor, pero pedimos sus oraciones que siga siendo paciente y perseverante! Estamos esperando, esperando y esperando....lo cual Dios ma ha estado confirmando ya que todo devocional, versiculo, et cetera que he leido en los ultimos dias incluyen muchos versiculos acera de esperar!

El ventilador: Danny duro mas de 8 horas ayer sin el ventilador, respirando solo por medio de su traqueostomia! Alabado sea el Senor! Le ponen el ventilador en la noche para que pueda descansar y no tiene que seguir trabajando. Hoy esperan que dure todo el dia respirando solo...unas 12 horas! Vamos a ayudarlo orando por el!

El corazon: Sigue conectado al marcapasos externo, pero ya no es constante. Solo se echa a andar cuando su ritmo cardiaco baja de 68 latidos por minuto. A noche tenia muchas horas sin que el marcapasos tuviera que trabajar y el solito esta manteniendo su ritmo en unos 90 latidos por minuto...un buen ritmo!

Nutricion: Creen que parte de la dificultad de Danny en respirar solo es porque esta muy desnutrido. Cualquier de Uds. que haya visto a Danny comer sabe que la desnutricion no viene de una falta de alimentos! El Dr. Palacios confirmo nuestra sospecha ayer, aunque Danny comia y comia su cuerpo no podia aprovechar los nutrientes debido a su defecto de corazon. Por ahora, le siguen poniendo nutrientes via su veina y su formula por medio de su tubo de alimentacion que va por su nariz a su estomago. Le estan dando unos 1000 calorias al dia. Quisieran darle mas, pero cuando aumentan la formula el liquido drenando de su area pulmonar tambien aumenta, debido a la condicion que tiene que se llama quilotorax, lo cual hace que su cuerpo no puede digerir proteinas ni lipidos. Le estaban dando un medicamento para el quilotorax, pero ese medicamento causa arritmias cardiacas (latidos irregulares). Por lo tanto, le quitaron el medicamento para el quilotorax para bajar la arritmia, pero entonces no le pueden aumentar su alimentacion. Asi que, estan tratando de decidir cual opcion es mejor: darle el medicamento para que le puedan alimentar mas (lo cual necesita para fortalecerse) y arriesgar la arritmia, o seguir sin el medicamento para no causar mas arritmias, pero tener que limitar su alimentacion. Nos dicen que el quilotorax es temporal (pero esa palabra significa algo muy diferente en esta situacion comparada con la manera en que siempre yo lo habia usado!). Nos dicen que Danny tendra que siempre tener una dieta baja en grasas y proteians.

Estoy ahorita en el departamento de Ricardo y Susana donde dormi anoche. Victor vino a desayunar conmigo, pero ahora lo escucho roncando mientras trabajo en la compu. A lo mejor debo seguir trabajando...o aun salir de secreto al hospital  Los amamos a todos y gracias por sus oraciones!