Another Danny update/Lo mas reciente de Daniel

Saw Danny a few minutes ago.  Thank the Lord that he was awake and responsive today!  He wanted stories like usual....David and Goliath, Goldilocks and the Three Pigs, Jack and the Beanstalk and, his favorite, The Little Red Hen.  The biggest news is that Danny is now on an external pacemaker.  His heart rate was dropping to around 40 beats a minute, which is extremely dangerous.  His normal heart rate should be around 90.  It seems he has developed a condition in which his heart is not sending the right electrical signals due to expected scar tissue from the surgery.  For now, the pacemaker is sending 90 electrical signals a minute to remind his heart to beat.  Lord willing, they will do a special 24 hour electrocardiogram tomorrow to confirm that this is the situation.  He is back on the feeding tube and his special formula, along with a special nutritional IV solution, so we are praying that strengthens him.  They are running the ventilator on a 3 hours on, one hour off cycle to help him get back to breathing on his own.  The last few days have been really tough...lots of emotional roller coasters and a multitude of thoughts running in, out and around my head.  Thank you for sustaining us and our children, family and staff with your prayers!

Vimos a Danny hace unos minutos. Gracias a Dios que estaba despierto y respondiendo bien. Queria sus historias como siempre...David y Goliat, Ricitos de Oro y los tres ositos, Jack y los Frijoles Magicos y, su favorito, La Gallinita Roja. Las noticias mas grandes por ahora es que Danny ya tiene un marcapasos externo. Sus latidos de corazon bajaban a unos 40 por minuto cuando deben estar en 90. Parece que ha desarrollado una condicion en que su corazon no esta mandando las descargas electricas como deben debido a la cicatrizacion de la cirugia de corazon. Por ahora, el marcapasos manda 90 descargas electricas a su corazon al minuto para que late. Si Dios permite, haran una electrocardiograma especial de 24 horas el dia de manana para confirmar esta situacion. Cabe la posibilidad que necesitara una marcapasos permanente. Ya tiene otra vez la sonda a su estomago y le empezaron a dar su formula especial. Esperamos que sus intestinos y estomago reaccionen bien. A la vez, le siguen pasando nutricion por la veina. En cuanto al ventilador, se lo ponen por tres horas y se lo quitan por una para que vaya fortaleciendose. Los ultimos dias han sido muy dificiles...todo una montana rusa emocional y una cantidad de pensamientos que corren por la cabeza. Gracias por sosternos a nosotros, a Danny y a nuestra familia en sus oraciones.

Grateful! / Agradecidos!

Saw Danny tonight around 7:30 p.m. He seemed much better than earlier in the day...much more peaceful and accepting of his trach! Besides, his favorite Dr. is in tonight....Dr. Marcos. That Dr. had already told me that he and Danny had hit it off....Danny followed him with his eyes while the Dr. made the rounds to the other kids. I asked Danny if the Dr. was his friend and he nodded "yes". Then, I called the Dr. the wrong name on purpose several times and Danny knew when I used the right name.....he knows his doctor's (one of them, anyway) name! The doctor walked in and said: "How's my Danny-boy?" Many times when that Dr. goes in to check Danny, Danny takes his hand and fishes around to grab the doctor's hand and doesn't want to let go! Balm for a mother's heart....knowing that the people caring for
truly care about him!

And, the big news...Danny smiled several times this evening! He had only smiled twice in two weeks and although he can't smile very big because his cheeks are rather sore yet from the tape from the ventilator...he sure did his best!

He is breathing quite a bit better with the ventilator on the trach than the ventilator in his throat and already the vent is on its lowest settings ever! Lord willing, tomorrow night they will take the vent off and just give him oxygen...but he will be doing the action of breathing on his own...which is what we so need! In the case that they need to connect the vent again it just snaps onto the trach...so much simpler and less traumatic than inserting it into his throat! Now, to learn how to take care of the trach! "I can do all things through Christ who strengthens me." Now, how to communicate with Danny who can't talk, can't read or write....picture cards? sign language? "I can do all things through Christ who strengthens me."

Good news...Danny's formula was delivered to our waiting room bench today by the distributor...and the five envelopes given to us yesterday by the lab were free! That was $35 worth of formula for nothing! And the Lord provided a donation today to cover the cost of the box of formula!

Thank you, Dr. Escamilla Yareli and Josue for the visit yesterday; Brian, Ana and Sebastian for the visit today; and Brother Victor and his family for the visit on Sunday! Thank you Dad, for letting Mom change her plane ticket to stay another 10 days! Thank you, Delta Airlines, for accepting the change as a medical emergency and not charging the flight change fee! Thank you, Mom, for staying! Thank you, Adrian and Vero, for keeping our family going in our absence....words truly cannot express our gratitude! Nana Rosa, how could we ever thank you enough....I am in total peace knowing that my kids are eating wonderfully with you in charge! (And boy do Victor and I miss your cooking!) Thank you, Mireya, for not only teaching our children, but loving our children and praying for our children. Thank you, Ricardo and Susana, for giving us a home away from home near the hospital....your place has helped keep us sane! Thank you, Iglesia Cristiana de Paz, and all of our brothers and sisters in Christ who have visited, brought sandwiches and prayed, prayed, prayed! To our other 17 children...this has been/is still so hard to not be with you...thank you for loving Danny so much that you are letting us be here with him...knowing that we would do this for any one of you! We love you so much! Thank you for obeying Grandma, Adrian, Vero, Mireya and Nana....thank you for keeping on...thank you for loving each other and for loving us! Thank YOU...you who is reading this update....for your prayers, your comments, your love, your tears, for passing on our requests and news! We are forever indebted to you!

Vimos a Danny esta noche como a las 7:30 p.m. Se veía mucho mejor que más temprano hoy...más tranquilo y aceptando mejor la traqueostomía. Además, le toca su doctor favorito hoy...el Dr. Marcos. Ese doctor ya me había comentado que él y Danny se habían hecho buenos amigos....los ojos de Danny le seguían y le seguían mientras checaba a los otros niños hoy. Le pregunté a Danny si el doctor era su amigo y movió la cabeza que sí. Luego, llamé al Dr. por el nombre equivocado varias veces y Danny me decía con la cabeza que no y que no...hasta que usé el nombre correcto dijo que sí. ¡Danny sabe el nombre de mínimo uno de sus doctores! Luego, cuando el doctor entró dijo: “¿Cómo está mi Danny-boy?” Muchas veces cuando este doctor lo revisa, Danny busca la mano del doctor para agarrarlo de los dedos y ¡no lo quiere soltar! Eso es medicina para mi corazón...¡el saber que los que esán cuidando de Daniel de veras lo quieren!

Las noticias grandes...¡Danny sonrió varias veces esta noche! Había sonreido solo dos veces en dos semanas y aunque no puede sonreir mucho porque sus cachetes están adoloridos y estirados por la cinta del ventilador....¡hizo su mejor intento de sonreir varias veces!

Su respiración ya se mejoró bastante con el ventilador contectado al traqueo en vez de en su garganta y ya ¡el ventilador está en su nivel más bajo que nunca! Si Dios permite, mañana por la tarde podrán quitar el ventilador y solo darle oxígeno...pero la acción de respirar lo estará haciendo él...lo que es muy necesario para que su corazón se sane. En el caso que tengan que volver a conectar el ventilador se conecta sencillamente al traqueo...más fácil y menos traumático que estarlo intubando. Ahora, ¡para aprender a cuidar al traqueo! “¡Todo lo puedo en Cristo que me fortalece!” Ahora, a comunicar con Danny que no puede hablar, escribir o leer...¿tarjetas con dibujos? ¿A señas? “¡Todo lo puedo en Cristo que me fortalece!”

Buenas noticias...la formula de Danny llegó hoy y ¡el distribuidor lo entregó hasta nuestra banca en la sala de espera! ¡Los cinco sobres que el laboratorio proveyó ayer fueron gratis! ¡Tienen un valor de $320 pesos! ¡Y el Senor proveyó un donativo hoy para cubrir el costo de su caja de formula!
¡Gracias, Dr. Escamilla, Yareli y Josue por su visita ayer; Brian, Ana y Sebastian por su visita hoy; y Hmo. Victor y su familia por la visita del domingo! ¡Gracias, Papá, por dejar a Mamá cambiar su vuelo para quedar 10 dias mas! ¡Gracias, Aerolineas Delta, por considerar eso una emergencia médica y no cobrar por cambiar el vuelo! ¡Gracias, Mamá, por quedar! ¡Gracias, Adrian y Vero, por mantener a la familia andando en nuestra ausencia...¡no hay palabras para expresar nuestra gratitud! ¡Nana Rosa, ¿cómo le podriamos agradecerla suficiente?...estoy en total paz sabiendo que los niños están comiendo muy bien con Ud. acargo! (¡Victor y yo extrañamos su comida mucho!) ¡Gracias, Mireya, no solo por enseñar a nuestros hijos, pero amarlos y orar por ellos también! ¡Graicas, Ricardo y Susana, por darnos un hogar fuera de nuestro hogar! ¡Gracias, Iglesia Cristiana de Paz, y todos nuestros hermanos y hermanas en Cristo que han visitado, que han traido tortas, y que han orado, orado y orado! A nuestros otros 17 hijos....esto ha sido/sigue siendo muy difícil de estar lejos de Uds.....gracias por amar tanto a Danny que nos permiten estar aquí a papá y a mí...¡sabiendo que haríamos lo mismo por cualquier de Uds.! ¡Los amamos tanto! Gracias por obedecer a Grandma, Adrian, Vero, la Hma. Mireya y la Nana...gracias por seguir adelante....gracias por amarse entre Uds. y ¡por amarnos a nosotros! Y, ¡gracias a TI!....aquel/aquella que está leyendo eso...por sus oraciones, comentarios, su amor, sus lágrimas, por compartir nuestras peticiones con otros. ¡Estaremos endeudados con Uds. para siempre!

Trach surgery update/La Cirugia de Traqueostomia

Danny came out of surgery around 2:00 p.m.  There were no complications during surgery...praise the Lord!  We were able to see him soon afterwards for about 20 minutes and got an update from the doctor.  It was wonderful to see him with the ventilator tube out of his mouth, but so hard to see him with the trach tube in his neck, especially not knowing how long he will have the trach.  Danny is still on a ventilator, but connected to the trach.  If all goes well, they may take him off the ventilator tomorrow and just have him on oxygen.  We pray he continues to progress so that in about 48 hours they can put him back on his special formula and move his nutrition forward.  He could really use some meat on his bones!  It is still hard to see him hooked up to so many IV lines, monitors, etc. and his coloration around his mouth looked funny....I assume from having been on a ventilator for 16 days.  Obviously he continues in Cardiac Intenstive Care.  God has brought us this far.....we are trusting He will take us the rest of the way!

Danny salio de cirugia para la traqueostomia alrededor de las 2:00 p.m.  No hubo complicaciones durante la cirugia....gracias a Dios!  Lo pudimos ver por unos 20 minutos y recibir el informe del doctor.  Fue maravilloso verlo sin el tubo del ventilador en su boca, pero dificil de verlo con el traqueo en su cuello, especialmente sin saber por cuanto tiempo tendra el traqueo....solo Dios sabe.  Danny sigue con el ventilador, pero conectado al traqueo.  Si todo va bien, a lo mejor manana le quitan el ventilador y solo le ponen oxigeno.  Esperamos que siga progresando para que en unas 48 horas le puedan empezar a darle su formula especial e ir avanzando en su nutricion.  Necesita un poco de carne en sus huesos!  Todavia es muy dificil verlo con tantos tubos, mangueras y cables, y la coloracion alrededor de su boca se veia un poco raro....me supongo por haber estado con un ventilador por 16 dias.  Obviamente sigue en Terapia Intensiva de Cardiologia.  Dios nos ha traido hasta aqui....y lo estamos confiando para llevarnos de la mano hasta salir victorioso!

August 27, 2013/27 de agosto del 2013

We have signed the permission for Danny's tracheotomy.  So, they could take him into surgery at any time.  They will let us know when he comes out of surgery!  Thank you for your prayers!

Ya firmamos el permiso para la traqueostomia de Daniel.  Asi que, lo podrian meter al quirofano en cualquier momento.  Nos avisaran cuando sale de cirugia.  Gracias por sus oraciones!  

Latest Update on Danny

Update...I actually have my computer at the hospital with broadband internet...it wouldn't work all day, but it is now! I'll do this quick before it decides to loose its signal. (Sent on facebook by Julie Monday evening)

Formula update: our friend in the U.S. found a nearly equivalent formula. So, I showed the ingredients to our doctor this morning and he said it looked good. Then, we decided to try and reach the Mexican lab that makes the formula here, just in case, and we actually talked to somebody! Come to find out, their Mexico City office is within walking distance of the hospital! What?! And the hospital can't get the formula? Welcome to public health care in a third world country! At the same time our doctor came back out and said he would prefer the Mexican formula because it has a little less fat content, which is what is causing Danny problems. We are sooooo grateful for all of you who offered to look for the formula and to Brian Leedy and all he did to find the formula and offer to get it to Mexico! Anyway, the local lab office sent us five small packets today to tide us over and their supplier is bringing a box to the hospital tomorrow. So, praise the Lord that Danny will get the formula his body needs!

General update: Danny is awake, continues to answer our questions by moving his head; he squeezes my fingers to let me know he wants to "tell" me something, but I have to guess the theme and then ask yes/no questions to try and communicate. Hmmmmm.....quite the challenge. There are small things that are a little off, but nothing hugely major...I feel that if they go through with the tracheostomy tomorrow and Danny can breathe on his own is really going to help him....it will strengthen his heart and they can feed him better through the feeding tube. He looks like he has lost quite a bit of weight and he was skinny to start with! He continues, for now, with the ventilator tube in his mouth, the feeding tube in his nose and still more wires and tubes than I can count...about 8 IV pumps still.

As this develops and I hear about other kids, I realize how serious Danny was and the journey that still lies ahead. Today, Dr. Palacios did another Glenn on a two year old and his mom was concerned because he has 8 IV pumps. She was able to see her son for two minutes this evening from the door and he is considered critical but stable. When Danny came out surgery, a bidirectional Glenn with Fontan (two major heart surgeries combined in one), he had 15 IV pumps and we didn't see him for 22 hours after surgery because he was critical and unstable. We praise Jesus for bringing him this far and we trust He will bring him all the way home...our home before his Heavenly home:-) I knew he was in serious condition, but I'm just realizing how serious it really was! (So, it only took me two weeks to see the miracle that God has already done!)

Trach update: Surgery continues to be tentatively scheduled for tomorrow..we don't have an exact time. If my internet decides to work tomorrow I will do my best to keep you informed!

Thanks for all of your loves and prayers! You guys are amazing!

A special request and invitation/Una peticion e invitacion especial

As far as Danny goes, things are about the same. He is on the ventilator, partially sedated in Cardiac ICU. He is back on one heart med because putting him back on the ventilator caused his blood pressure to go a bit wacky, but they hope to have him off of that tonight. Today was a tough visit because he opened his eyes real wide and looked at me real mad. I asked: "Are you mad?" He shook his head no. I asked: "Are you sad?" He shook his head yes and started to cry...which is totally silent because with his vocal chord paralyzed and the ventilator he makes no sound at all...just tears squeezing out of the corner of his eyes. He grabbed my fingers and I had to pry myself loose when the visit was over.  It's tough to see him sedated, but it's tough to see him awake and alert about what is going on.

He continues to be scheduled for a tracheostomy sometime Tuesday... (I am learning more and that is the more correct term, rather than tracheotomy..which refers to the incision in the trachea, where a tracheostomy refers to the "stoma" or tube they insert into the incision to help him breathe...OK, so that's more than you wanted to know, but you might as well learn along with me!)...which leads me to a prayer request and invitation:

The request: we are praying for a miracle...that God would miraculously heal Danny's vocal chords before Tues. which may be just what we need to prevent the tracheostomy. As far as the doctors can tell, his bronchials are quite clear and it seems to be the vocal chords that are causing the inability to extubate him (take him off the ventilator).

The invitation: for those who feel led, we would like to invite you to fast with us tomorrow, Sunday, August 25th, for this miracle. I will be honest...I don't fully understand God's purposes behind/in/through fasting, but I do know that He called His people to do so under extreme circumstances, when seeking guidance and His almighty moving! I do believe this situation meets that criteria  If you feel led to join us, please do so as the Lord leads. For example, I have rather low blood sugar and when I fast I usually need to drink some clear fruit juice. Please fast for the amount of time the Lord leads, whether that just be missing one meal or the entire day. I also know and firmly believe that God is sovereign and fasting is not a twisting of the Almighty's arm...as if we could...but I know His Word shows a time and place for fasting...and we feel led to do so now and invite any of you to join us. If the Lord does not stop the tracheostomy, then we can fully trust that it is His perfect will and it is GOOD for Danny and for our family and that He will give us the wisdom, love and strength that we will need. (Can you tell this scares me? OK, so it scares me for as long as it takes for me to remember that God is love, God is good, and God is BIG!)

Thank you and we KNOW that we will see God work and that work will be GOOD no matter what it is because: "I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 and "We know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28 Those are PROMISES which means they are TRUE! Amen!

One more item/request: Danny needs a special formula because his body is unable to breakdown lipids and proteins right now. The hospital will have run out of that formula as of Mon. and the doctors asked if we could get some more. We have called all the major pharmacies in Mexico City and literally NOBODY has it! I found the actual lab that produces it online and we called them, but it is a weekend so the only person I could reach told us to call on Mon. morning and he commented that they don't generally sell to the public. Please pray that we can get this formula for Danny ASAP to help strengthen him!

En cuanto a Danny, las cosas siguen basicamente igual. Sigue con el ventilador, parcialmente sedado en Terapia Intensiva de Cardio. Le volvieron a poner un medicamento para el corazón porque cuando le volvieron a poner el ventilador su presión se afectó, pero esperan quitar ese medicamento esta noche. Hoy fue una visita difícil porque abrió sus ojos muy grandes y me miró muy enojado. Le pregunté: "¿Estás enojado" Sacudió la cabeza que no. Le pregunté: “¿Estás triste?” Sacudió la cabeza que sí y empezó a llorar...solo que es totalmente silencioso cuando llora porque tiene la cuerda vocal paralizada y además el ventilador, entonces no hace nada de ruido...solamente se veían las lágrimas saliendo de las esquinas de sus ojos. El agarró mis dedos y los tuve que quitar a las fuerzas a la hora de terminar la visita.  Es difícil verlo sedado, pero es difícil verlo despierto y más alerta en cuanto a lo que está pasando a su alrededor.

El sigue agendado para una traqueostomía para el martes... (Estoy aprendiendo más acerca de todo eso y el término correcto es traqueostomía porque traqueotomía se refiere solo a la incisión que se hace en la traquea donde la palabra traqueostomía se refiere a la “stoma” o “canula” que colocan en la incisión para ayudarlo a respirar...bueno, eso es mucho más de lo que querían saber, pero si yo voy a aprender, ¡Uds. pueden aprender conmigo!..lo cual me lleva a la siguiente petición e invitación.

La petición: estamos orando por un milagro..que Dios sanara milagrosamente las cuerdas vocales de Danny antes del martes, lo cual podría prevenir la traqueostomía. En cuanto los doctores puedan determinar, sus bronquios ya están bien y parecen ser las cuerdas vocales lo que están causando las dificultades de extubarlo (quitarlo del ventilador).

La invitación: para los que sienten llamados a hacerlo, los estamos invitando a ayunar mañana, domingo, 25 de agosto, por este milagro. Seré honesta...no entiendo completamente los propósitos de Dios en el ayuno, pero sé que Él llamaba a su Pueblo a ayunar en circunstancias graves, cuando buscaban su guía y su mover poderoso. Yo creo que esta situación cumple con esos parámetros. Si sientes Dios dirigiéndote a juntarte con nosotros..por favor, hazlo conforme a su guía. Por ejemplo, tengo el azúcar un poco baja y cuando ayuno casi siempre necesito tomar algo de jugo. Por favor, ayunen por el tiempo que Dios les indique....si es una sola comida o todo el día. Yo sé y creo firmemente que Dios es soberano y que el ayunar no es un intento de que haga nuestra voluntad...como si pudieramos hacer tal cosa....pero sé que su Palabra muestra un lugar y tiempo para el ayuno...y sentimos dirigidos hacerlo ahora y les invitamos a juntarse a nosotros...si Dios así los dirige. Si el Señor no para la traqueostomía entonces confiamos plenamente que esto es su voluntad perfecta y BUENA para Daniel y nuestra familia y que Él nos dará la sabiduría, amor y fuerza que necesitaremos. (¿Se nota que eso me asusta? Solamente me asusta por el tiempo que me toma recordar que ¡Dios es amor, Dios es bueno y Dios es GRANDE!)

Gracias y SABEMOS que veremos a Dios obrar de una manera que será bueno porque: “Porque yo sé los pensamientos que tengo acerca de vosotros, dice Jehová, pensamientos de paz, y no de mal, para daros el fin que esperáis.” Jeremías 29:11 y “Sabemos que a los que aman a Dios, todas las cosas les ayudan a bien, esto es, a los que conforme a su propósito son llamados.” Romanos 8:28 ¡Estos son PROMESAS lo cual significa que son VERDADEROS!

Una cosa más: Danny necesita una formula especial, formula elemental Deilém, porque su cuerpo no puede digerir lípidos y proteinas por ahora. El hospital tiene suficiente formula para mañana pero para el lunes ya no hay. Los doctores nos preguntaron si podíamos conseguir la formula y dijimos que sí...solo que NINGUNA farmacia lo tiene! Ya probamos todas las farmacias grandes del D.F. Busqué en el internet y encontré el laboratorio que lo hace en Querétaro. Hablé, pero como es fin de semana, el muchacho nos dijo que habláramos el lunes pero que normalmente no venden al público. Por favor, ¡oren que podamos conseguir la formula lo más pronto posible para fortalecer a Danny!

Request for Bold Prayers

Danny's tracheotomy is scheduled for “most likely” Tuesday according to the Dr. It occurred to me that the delay allows time for healing of his vocal cord which would make the tracheotomy unnecessary. Let's go boldly to the Lord with this request.

Another development: Danny's body has not been processing nutrients from his regular liquid diet, so he was put on a special liquid diet. The hospital has a limited supply which will run out on Sunday, so Victor and Julie need to purchase it themselves. Please pray that they are able to find it and that it's not too expensive.

Thank you for your prayers. (Julie's Mom)

La traqueotomia de Daniel esta agendada posiblemente para el Jueves. Pienso que el retraso le da mas tiempo para sanar a las cuerdas vocales de Dany, lo que haria que la traqueotomia fuera innecesaria. Vayamos en oracion delante de Dios con esta peticion.

Tambien, el cuerpo de Dany no ha estado procesando los nitrientes de su dieta liquida, asi que, le pondran una dieta especial. El hospital tiene un suministro limitado que se terminara el Domingo; Victor y Julie tienen que comprarlo ellos mismos. Por favor oren para que ellos puedan encontrarla y que no sea muy cara.

Gracias por sus oraciones.  (Mama de Julie)

Danny Back on Vent

Danny is back on the ventilator. The next step is a tracheotomy. All operating rooms are scheduled for the weekend, so we don't know when he'll have the tracheotomy. Please pray for healing of his vocal cord, and for Danny to continue to be peaceful in spite of his inability to communicate. We are trusting God for His perfect timing for Danny's healing. (Julie's Mom)

Le volvieron a colocar el ventilador a Dany. El siguiente paso es la traqueotomia. Todos los cuartos de cirugia estaran ocupados el resto del fin de semana, asi que no sabemos cuando le haran la traqueotomia. Por favor oren para que Dios sabe sus cuerdas vocales, y para que Dany pueda tener paz con respecto a que no puede comunicarse. Confiamos en el tiempo perfecto de Dios para la recuperacion de Dany. (Mama de Julie)  

Mixed Hope and Concern

Danny was taken off the ventilator a couple of hours ago, but his breathing is labored and there's a 50% chance he'll have to go back on the vent. If that happens, they will schedule a tracheotomy because the doctors don't want him on the vent anymore. All other systems are doing well – he's off all of his IV heart meds and his bronchials are clearing up. The paralyzed vocal cord seems to be causing the breathing problem. We don't know if or when that will heal, and if it doesn't, what will be done.

Julie reports that Danny is alert and knows that he is unable to talk so he doesn't try to. Both of his hands are tied down because of the IVs, so all he can do is nod his head. He is really cooperating well with the nurses. Victor and Julie only saw him once today.

Please pray that Danny will not have to be put back on the ventilator and have a tracheotomy. That is the biggest issue right now. Thank you again for your friendship, concern, and prayers. (Julie's Mom)

Le removieron el ventilador a Dany hace unas horas, pero le esta costando trabajo respirar y hay un 50% de posibilidad que le vuelvan a colocar el ventilador. Si es asi, le haran una traqueotomia porque los doctores no quieren colocarle el ventilador otra vez. Lo demas esta fucionando bien-ya le quitaron el suero y sus bronqueos estan limpios. La paralisis de sus cuerdas vocales paracen ser la causa del problema respiratorio. No sabesmos si oh cuando sanaran, y si no sanan que pasara.

Julie reporta que Dany esta alerta y sabe que no puede hablar asi que ni siquiera lo intenta. Ambas de sus manos estan amarradas por el medicamento que le estan pasando por agujas, asi que todo lo que puede hacer es mover su cabeza. El realmente esta cooperando con las enfermeras. Victor y Julie solo lo vieron una vez hoy.

Por favor oren para que no le vuelvan a colocar el ventilador y tengan que hacer la traqueotomia. Esa es la mayor preocupacion ahorita. Gracias otra vez por su amistad, preocupacion, y oraciones.  

Julie's Surprise Visit Home

 Danny's situation continues about the same....he is still in Cardiac ICU because he is still on the ventilator. We are waiting for the steroids and the antibiotics to take effect (and for the Lord to do His mighty work!) in order for the swelling in his bronchials to go down so that they can try to extubate (take him off the ventilator) once again. The other factor is the paralyzed vocal chord that may be interrupting his ability to breath. We won't know if the vocal chord is the problem until they try to take the ventilator off again...if they are unsuccessful then they will be doing a tracheotomy.

Since Danny's condition is rather stable, Julie decided to make a surprise visit home while Victor stayed at the hospital. Two of Julie's friends from church brought her home Tuesday afternoon, and took her back to the hospital this morning. She received an exuberant homecoming, and her short visit was full of conversations and games with the kids.

Victor reports that Danny is quite alert and peaceful. He seems to understand that he needs to lay still, leave the tubes alone, and answer only by shaking or nodding his head.

While Julie was home, she received word that a two-year old girl who was also in cardiac intensive care died. Julie had led her mother, Miriam, to the Lord last Sunday. Praise the Lord that Julie is able to minister to others in the midst of her own challenges. Please pray for Miriam that she would find strength in her new-found faith in the Lord to deal with her loss.   

Dave is safely back home in the U.S. while I continue here at Refuge Ranch.  I plan to return home next Wednesday.  We hope that by that time Danny will be in a regular room, allowing others to be with him  so that Victor and Julie can make home visits, or even better, be back here at home with his family!  Thank you for your faithful and continual prayers.  God is our strength! (Julie's Mom)

Latest News on Danny

Results of Danny's procedure: his trachea, esophagas and brochials are all very swollen - official diagnosis: severe tracheal endo bronchitis. Also, one of his vocal cords is paralyzed which could also be blocking his airway. All cultures for infection so far are negative, but he has a low fever and the blood tests still indicate a possible infection. He will continue on antibiotics and steroids for three days. Nothing more can be done medically at this time. Possibly Thursday they may try to remove the vent again. If the swelling is down and he still can't breathe, they will do a tracheotomy. That is safer than keeping him on the vent any longer, because he needs to start breathing on his own in order for his organs to get the exercise they need to recover from surgery. Three specialists, (pulmonologist, ICU Dr., and Dr. Palacios who did the heart surgery) are all working together and agreeing on this course of action. They told Julie that Danny's situation is not life threatening at this time. Please pray for healing of the trachea, esophagas, bronchials and vocal cord. (Julie's Mom)

Urgent Prayer Request

Urgent prayer request: They're taking Danny into surgery to insert a camera down his throat to discover why Danny's oxygen level is remaining low requiring the ventilator despite the fact that his throat isn't extremely swollen and they are suctioning the fluid out of his lungs. This surgery requires general anesthesia which is a risk because Danny is on a ventilator. Please pray for wisdom for the doctors and for God to continue to sustain Danny. Thank you. (Julie's Mom)

Danny Back on the Ventilator

Sad to report that Danny had to be put back on the ventilator Sunday afternoon - not because of his throat, however, but because he has a lot of lung congestion and he's too weak to cough. His oxygen level was down to 40% (should be closer to 100%) so putting him back on the vent was a necessary life-saving procedure. When Julie saw him at 3:30, he was totally sedated because they had just reinserted the vent.
Julie was able to get permission for Dave (Julie's Dad) to see Danny Sunday evening because Dave flies back to the U.S. on Tuesday and hasn't seen Danny because Dave arrived the day of Danny's surgery. A friend drove Dave to the hospital after church today. I stayed at Refuge Ranch with the kids. Appreciate so much your prayers. God is always with us through the ups and downs. He is faithful and we trust in Him. (Julie's Mom)

This is Dave. Yes, I was able to see Danny yesterday! He was heavily sedated, but when I asked him if he would like to take a walk with Grandpa when he got out of the hospital I thought he gave a slight nod. He looked good, for all that he's been through, if you can call it looking good having a feeding tube down your nose and a ventilator down your throat. I kept my visit short so Julie would have some time with Danny, which she had. It was sure great seeing the little buddy of mine. Our specific prayer is that the lung congestion clear up, along with continual improvement with all other body systems. (Julie's Dad)

Saturday Night Update/Las noticias del sábado por la noche

El blog en español empieza abajo del blog en inglés. ¡Gracias!

Saw Danny at 7:00 p.m. tonight and he had been without the ventilator for 2 hours already!
Praise the Lord!  His upper airways are still quite swollen and so it is important that Danny not try to talk (he has NO voice) or cry in order to help the swelling to continue to go down.  If the swelling would increase they would have to put the ventilator back in again.  The first 48 hours without the ventilator are the most critical...so we keep praying!

The thing is, Danny wants to talk!  He especially wants water!  The doctor said they would moisten his lips and tongue, which I hope will make him more comfortable so that he will stop trying to ask for water!

I explained to Danny, who was quite conscious, the importance of not talking or crying or they would have to put the tube back in his throat.  He does NOT want that tube put back in!  As soon as I got done explaining the situation to him, he scrunched up his face to not cry!  A few minutes later he wanted to talk/cry again and all I said was, "Danny....", in that mommy tone of voice that we mommies have, and he immediately scrunched up his face to be quiet!  It was the maximum demonstration of self-control!  I was so proud of him I wanted to cry!  He is definitely doing his part to get well and get home!

As for the other updates:

• his lungs had some fluid this morning, but the afternoon x-rays showed that they were clear again, so the drainage tubes are doing their job!
• the doctors are gradually reducing Danny's other medications, including his heart pressure medication
• there were only 9 IV pumps today, rather than 15 or 16 like at the beginning
• Danny is getting lactose-free formula through a feeding tube that is inserted in his nose (I told him today:  "Danny, you're all backwards...you breathe through your mouth and eat through your nose!")
• blood tests showed a possible infection in Danny's system so the doctors have started him on a wide-spectrum antibiotic to cover those bases until the culture and blood test results come in on Monday to confirm or deny the presence of an infection
• Doctors should be removing Danny's two chest tubes tonight (He had two chest tubes draining excess blood and fluids from his chest cavity and two draining his lungs.  The lung tubes need to stay in longer...which is normal.)

So, please pray that Danny stays off the ventilator and that there is no infection!  Thank you so much!

Here's something extra:

This is the ICU/surgery/cardiology/orthopedic waiting room.  At night, all of the parents who have children in regular ICU and Cardiac ICU sleep here.  We each stake out our spot and spread out our blankets (which we store in lockers on the main floor during the day).  So, this is Victor and my "suite" :-)  Through this experience I have some advice for those who are looking for a future mate (or a great premarital exercise):

If you can imagine sleeping on the floor of a hospital waiting room night after night with the guy while your critically ill child, who you can only see for less than an hour a day, is fighting for his life....you can date the guy!

If you can imagine the guy sleeping by himself on the hospital waiting room floor so that you can go and sleep in a bed....you better marry the guy!  (Glad I did!)

En español:

Vimos a Danny hoy a las 7:00 p.m. y ¡ya había pasado dos horas sin el ventilador!  ¡Alabado sea el Señor!  Sus vias aereas todavía están bastante hinchados.  Es muy importante que Danny no intente hablar (no tiene nada de voz) ni llorar para que lo inflamado pueda bajar.  Si la inflamación sigue tendrían que volver a poner el ventilador.  Las primeras 48 horas sin el ventilador son críticas…así que, ¡seguimos orando!

La cosa es, ¡Danny quiere hablar!  ¡En especial, quiere agua!  El doctor dijo que le iban a remojar los labios y la lengua y espero que con eso se tranquiliza un poco y deja de tratar de pedir agua.

Le expliqué a Danny, quien estaba bastante consciente, de la importancia de no hablar ni llorar o le iban a tener que volver a poner este tubo en su garganta.  ¡El NO quiere el tube devuelta!  En cuanto terminé de explicarle la situación, hizo una cara de mucho esfuerzo tratando de no llorar.  A los pocos minutos quiso llorar/hablar y lo único que hice fue decirle:  “Danny…” en ese tono de voz de mamá que las mamás tenemos e, inmediatamente, ¡hizo la cara de esfuerzo para controlarse!  ¡Fue una muestra increíble de autocontrol!  ¡Estuve tan orgullosa de él que quise llorar!  ¡Definitivamente él está poniendo de su parte para mejorarse y venir a casa!

En cuanto a lo demás:

·         Sus pulmones tenían algo de líquido en ellos en la mañana, pero el rayos-x de la tarde mostró que estaban limpios de nuevo.  Eso quiere decir que los tubos de drenaje están funcionando bien.

·         Los doctores están gradualmente pudiendo bajar las cantidades de todos los medicamenots.

·         Hubo solo 9 bombas en la torre de sueros hoy, en vez de 15 o 16 como al principio

·         Le están dando formula libre de lactosa por la nariz (Le dije hoy: “Danny, ¡estás todo al revés…respiras por la boca y comes por la nariz!”)

·         Sus exámenes de sangre muestran una posible infección, así que los doctores le empezaron a dar un antibiótico de alto espectro, por si acaso.  El lunes estarán los resultados de sus cultivos y otros exámenes para confirmar o negar la presencia de una infección

·         Hoy se supone que le iban a quitar sus dos tubos de drenaje de su pecho (Tiene cuatro: dos que drenan de su pecho, la sangre o líquido que se junta allí, y dos saliendo de sus pulmones.  Los tubos de los pulmones todavía tienen que durar puestos,)

Así que, ¡siguen orando que no le tienen que volver a poner el ventilador y que no haya infeccion!  Muchas gracias!

Aquí hay algo extra:

Esta es la sala de espera de Terapia Intensiva/cirugía/cardiología/otropedía.  De noche, todos los papás que tenemos hijos en terapia intensiva o terapia intensive de cardio, nos dormimos aquí.  Cada quien agarra su lugar y tiende sus cobijas (las cuales guardamos en lockers durante el día en la planta principal).  Así que, ese es el “suite” de Victor y yo.  Por medio de esta experiencia tengo un consejo para aquellos que están buscando pareja (o como un buen ejercicio pre-matrimonial):

Si puedes imaginar dormir en el piso de la sala de espera de un hospital noche tras noche con el chico mientras su hijo, en estado grave y a quien solo puedes ver por menos de una hora cada día, lucha por su vida…¡ese chico puede ser tu novio!

Si puedes imaginar al chico durmiendo solito en el piso del hospital para que tú puedas ir a dormir en una cama…¡cásate con él!  (¡Estoy feliz que así hice!)

Specific Prayer Requests for Danny

Two prayer requests for Danny: 1. Drs. plan to remove the ventilator this afternoon. Please pray that the steroids brought down the swelling in Danny's airway enough for him to breathe on his own. Every time they re-insert the vent tube, it causes more damage to the throat which leads to swelling and inability to breathe on his own - a vicious cycle. The vent has been inserted twice now, and we pray that once it's removed today it won't have to be inserted again. 2. Blood test showed a possible infection. Drs. put Danny on antibiotics and results from a culture will come back on Monday. Please pray for no infection. They also plan to remove two drainage tubes from his chest today. Julie saw Danny at 2 p.m. and says he is more peaceful and alert even though he is only partially sedated. Thank you so much for your continued faithful prayers. We know that God is hearing every one! (Julie's Mom)

Tonight's Update

Danny is making progress. Julie saw him at 8:30 p.m. for about 20 minutes. He was somewhat alert and able to respond with nods. He is receiving liquid food through a feeding tube into his stomach rather than just through IV. They are gradually cutting back on meds and oxygen and hope to remove two of his four drain tubes tomorrow as well as the ventilator. He is still considered in critical condition, but is stable rather than unstable. These are all very encouraging signs. (Julie's Mom)

Update on Danny

Victor and Julie saw Danny at 2 p.m. He was even more sedated because they had just removed his bladder catheter. The main concern now is that he will be able to be removed from the ventilator this weekend. As long as he's on the vent, he has to be sedated and it slows down the healing process. Thankfully, at this point, everything else seems to be stable. Posted by Julie's Mom

Thursday, August 16, 2013/ el jueves, 26 de agosto, 2013

We had an incredible day today…we got to see all of our kids in one day! 

¡Tuvimos un día increíble ya que pudimos ver a todos nuestros hijos en un solo día!

(Para español vaya al final del blog en inglés, después de las fotos.  ¡Gracias!)

I’ll start with Danny!  They cancelled the noon visit due to other critically ill children that needed the hospital staff’s full attention.  However, just 10 minutes after we got back from spending four incredible hours with our other children, they called us in for a 15 minute visit.  Victor was so gracious to give me the full 15 minutes with Danny!

I’ll give you the run down like the doctor does:

Heart: His heart is functioning very well!  He is on only two, rather than three, heart medications to keep his blood pressure where it should be and help his blood vessels return to their normal size after being on the heart pump for so many hours during surgery on Monday.

Lungs: Danny is still on a ventilator.  They had tried to remove the ventilator yesterday, but Danny only tolerated several hours breathing on his own when swelling in his upper airways required the doctors to decide to put him back on the ventilator.  This also means that he is sedated again.

Kidneys: He is still on a med to help his kidney function as he had stopped urinating yesterday, but the med is working and he is urinating well.

Diet: Just tonight they hope to start him on lactose-free formula through a feeding tube to get his tummy working again.

General: There are only 11 IV pumps (11 different medications), rather than 15 or 16 like the beginning!  Reductions in medication are huge steps forward!  One of his catheters measuring his heart pressure became crystallized with medication, so they removed that and put him under general anesthesia this evening and placed a new catheter in his groin.

When I saw him this afternoon he was more peaceful than yesterday.  When Danny was unsedated and off the ventilator he was very agitated and trying to remove all the cables and hoses!  However, he is not very heavily sedated now, so he opens his eyes, recognizes me, nods and shakes his head in response to my questions.  He knows he his thirsty and tries to ask for water, but he has no voice due to the ventilator…I just read his lips! Man, that’s tough!  He knows he is trying to talk and doesn’t hear his voice…I can understand his lips, but I can’t give him what he so wants!  We both get frustrated and sad!  As my mother would say:  “This too shall pass!”  As our daughter Diana reminded me on Facebook today, only God is eternal..this situation is NOT!

The biggest prayer request right now is that they will be able to remove the ventilator sometime this weekend.  It is very important that he breathe totally on his own to help his heart heal!

As for our 17 other children…we saw them today too!  Grandpa and Grandma and Adrian and Vero brought them to see us!  We asked permission from the lead CICU (Cardiac Intensive Care Unit) physician and he let us leave for a few hours, leaving our cell numbers behind, of course! 

The beginning of the afternoon was quite an adventure as protestors at the local university had closed the main road that runs past the hospital. So, Victor and I took a taxi to meet up with the kids and then all 23 of us travelled in public transportation and then walked to a park nearby.  In the process, Grandpa almost got stuck in the automatic bus door.  He wedged free, but his camera bag got stuck!  The door closed and the bus was going to pull away, but thanks to Ruth’s shrilling screams and Victor’s whistle, the driver stopped, opened the door and all was well again!  (Those of you who know my Dad need to ask him about his public transportation experiences in Mexico!) 

What a person won’t do to have the whole family together!  It was SOOOOO worth it!

We spent the next two hours at a park with a pond, ducks, turtles and a playground eating Kentucky Fried Chicken!  Then we celebrated Fatima’s 13^th birthday with two cakes:  one that survived the family’s two hour hot drive to the hospital, then on our public transportation adventure and then on the walk to the park.  The second cake was a homemade cake made by Richard.  

Richard and Susana are our angels!  They are the couple that have opened their apartment to Victor and I only five minutes from the hospital!  Some nights Victor and I both sleep at the hospital, on the waiting room floor, while other nights we take turns coming to sleep at the apartment.  We have both showered here and breakfasted here.  Well, today our angels, Richard and Susana, surprised us by joining us at our picnic with a homemade cake!

Do you know how God sent these angels to us?  Richard is the brother of a friend of my great-aunt Lois who lives in Central Ohio!  Great-aunt Lois told her friend about her family who said: “I have a brother who lives in Mexico!”  Turns out that that brother, Richard, “just happens” to live five minutes from Danny’s hospital!  The lengths God doesn’t go to to shower His love and care upon His children!

After the picnic and birthday celebration, we took the kids to the hospital so that they could at least see it from the outside and the main waiting room and thereby better imagine where Victor and I are with Danny.  So hard to say goodbye, but so glad we could say goodbye because that meant that we were able to spend time together!

Thank you, Jesus, for today!

At the park! 

En el parque

Carolina, Ana and David playing!

Carolina, Ana y David jugando

Fatima taking the traditional "bite" of her 13th birthday cake! 

¡Fatima tomando la mordida de su pastel al celebrar sus 13 años!

The family, minus Danny and plus Adrian and Vero, on the hospital steps!

La familia, menos Danny y más Adrian y Vero, en las escaleras principales del Instituto Nacional de Pediatría.

¡Tuvimos un día increíble ya que pudimos ver a todos nuestros hijos en un solo día!

¡Empezaré con Danny! Cancelaron nuestra visita a mediodía ya que hubo otros niños que requerían toda la atención de los doctores y enfermeras.  Pero, solo 10 minutos después de haber pasado cuatro horas increíbles con nuestros otros hijos, nos llamaron a una visita de 15 minutos con Daniel.  ¡Victor fue muy generoso en darme a mi todos los 15 minutos con Danny! 

Les doy el reporte como me lo da el doctor:

Corazón: ¡Su corazón está funcionando bien!  Solo tiene dos , en vez de tres, medicamentos para mantener su presión como debe de estar y para ayudar a sus vasos sanguineos regresar a su tamaño normal después de haber estado conectado a la bomba tanto tiempo durante cirugía el lunes.

Pulmones: Danny sigue con el ventilador puesto.  Intentaron quitarlo ayer, pero Danny solamente toleró un par de horas respirando solo cuando sus vías aéreas se hincharon y tuvieron que tomar la decisión de volver a poner el ventilador.  Eso quiere decir que ya está un poco más sedado de nuevo.

Riñones: Sigue con un medicamento para ayudar el funcionamiento de sus riñones ya que había dejado de orinar, pero la medicina está funcionando y está orinando bien.

Dieta: Hoy en la noche esperan empezar a pasarle formula deslactosada por un tubo directo a su estómago para que pueda ir acercándose a comer de nuevo.

En general: Tiene solo 11 medicamentos, en vez de 15 o 16 como al principio.  Reducir los medicamentos es un gran avance.  Uno de sus catéteres que mide las presiones de su corazón se cristalizó con medicina, así que hoy lo durmieron con anastesia general para poner un nuevo cateter en su ingle.

Cuando lo vi esta tarde estaba más tranquilo que ayer.  Cuando Danny no estaba sedado y no tenía el ventilador estaba muy agitado e intentaba quitar sus cables y mangueras.  Pero, hoy, aunque está sedado no es tanto, así que abre sus ojos, me reconoce, mueve la cabeza sí y no cuando le hago preguntas.  Él tiene sed e intenta pedir agua, pero no tiene voz debido al ventilador…¡solo le leo los labios!  Eso es difícil de vivir….él sabe que está hablando pero que no se escucha su voz…I puedo entender sus labios pero no puedo darle lo que pide.  ¡Los dos nos frustramos y nos ponemos tristes!  Pero, como mi mama diría:  “Eso también pasará.”  Como nuestra hija Diana me recordó en el Facebook hoy, solo Dios es eterno…¡esta situación no lo es!

La petición más grande por ahora es que puedan quitarle el ventilador este fin de semana.  Es muy importante que él empieza a respirar por si solo para ayudar a su corazón sanarse.

En cuanto a los otros 17 de nuestros hijos…¡los vimos hoy también!  Grandpa y Grandma (mis papás) y Adrian y Vero los trajeron para vernos.  Le pedimos permiso al doctor de terapia intensiva de cardio para que pudieramos pasar unas horas con ellos, dejando nuestros números celulares, por supuesto.

El principio de la tarde fue toda una aventura ya que hubo una protesta que cerró Insurgentes Sur enfrente del hospital y la camioneta no pudo llegar.  Así que, Victor y yo fuimos en taxi para encontrar a los niños y luego los 23 de nosotros viajamos en el metrobús y luego caminamos a un parque.  En el proceso, Grandpa casi se quedó atorado en la puerta del metrobús, pero su bolsa de su camará sí quedó atascado.  La puerta se cerró y el autobús empezó a arrancarse, pero, gracias a los gritos de Ruth y el chiflido de Victor, el chofer se detuvo, abrió la puerta y soltó la bolsa de mi papá.  Ya van varias aventuras que mi papá tiene en transporte público en México.

¡Lo que uno no hace para que la familia pueda estar juntos!  ¡Valió la pena!

¡Pasamos unas dos horas en el parque con un lagito, patos, tortugas y una área de juegos, comiendo pollo Kentucky!  Luego celebramos los 13 años de Fatima con dos pasteles:   uno que sobrevivió el viaje de dos horas de la familia, luego nuestra aventura en el transporte público y luego la caminata al parque.  El otro pastel fue hecha a mano por el Hmo. Ricardo.   ¡Ricardo y Susana son nuestros ángeles!  Ellos son una pareja que han abierto su departamento a nosotros mientras Daniel está en el hospital.  Viven solo 5 minutos del hospital.  Algunas noches Victor y yo dormimos en el piso de la sala de espera del hospital, mientras que otras noches nos turnamos a dormir en el departamento; nos bañamos aquí, usamos el internet, et cétera.  Bueno, ¡hoy nuestros ángeles nos sorprendieron al acompañarnos a nuestro picnic con un pastel hecho en casa para Fatima!

¿Saben cómo fue que Dios nos mandó estos ángeles?  ¡Ricardo es hermano de una amiga de mi bis tía Lois en los Estados Unidos!  Mi bis tía le contó a su amiga de nuestra familia quien comentó:  “Tengo un hermano que vive en México.”  Al final de cuentas, ese hermano, “por casualidad”, ¡vive cinco minutos del hospital de Danny!  ¡Lo que Dios no hace para demostrar su amor y cuidado hacia sus hijos!

Después del picnic y de celebrar los cumpleaños, llevamos a los niños a conocer el hospital para que mínimo puedan imaginar el lugar donde estamos.  Fue tan difícil decir adiós, pero gracias a Dios que pudimos decir adiós porque eso quiere decir que pudimos estar juntos.

¡Gracias, Jesús, por ese día!

Some Good News about Danny

Victor and Julie only saw Danny once yesterday.  Doctor report as of 11 p.m. Wednesday: Danny's kidneys are working, no fluid in lungs, heart is functioning well, drs. were able to remove one of three heart meds and a neck catheter.  Biggest concern right now is that he is back on the vent.  Is receiving steroids to lessen swelling in the throat and hope to attempt to remove vent Friday evening or Saturday.  Danny is sedated again because of the vent.  Victor and Julie hope to see Danny today between noon and 2 p.m.  Today is Fatima's birthday.  Adrian, Vero, Dave, I, and all the kids plan to drive to the hospital to see Victor and Julie and have a picnic with them after 2 p.m.  Drs. said they could leave the hospital for 2 hours as long as they leave cell phone numbers.  Much to thank the Lord for, and still a long road ahead.  (Posted by Julie's Mom)

A Step Back and a Step Forward

Danny is back on the ventilator. His throat is too swollen for him to breathe on his own. The fluid on his lungs has cleared up. Victor and Julie have not seen Danny since 1 p.m. today so not much more news. (Julie's Mom)

Latest News about Danny

Danny update: Good news - Danny is off the ventilator and breathing on his own with an oxygen mask. But he is very agitated. He can't talk because his vocal cords were affected (hopefully temporarily) by the vent. Julie told me that she could see that he was crying but made no sound. He figured out how to push the oxygen monitors off of his toes and tries to remove the other tubes he's attached to. He tried to whisper that he wants water but he's not allowed to drink or eat. Please pray that he will become more peaceful, that the nurses would continue to be patient, that the Lord will sustain Victor and Julie and of course for Danny's continued healing. Julie expects a doctor's report this afternoon. We appreciate your continued prayers.   

Just ready to post this and got another update from Julie. The doctor reports that one of Danny's kidneys is swollen. He is getting meds to take down the swelling. Dialysis wires were inserted during surgery in case dialysis will be needed. Please pray that dialysis will not be needed. The other issue that developed is that now Danny is struggling to breathe on his own. Please pray that he will not have to go back on the ventilator. (Posted by Julie's Mom)

Noticias de Daniel: Buenas noticias- Ya le quitaron el ventilador y esta respirando por si solo con una mascara de oxigeno. Pero esta muy inquieto. No puede hablar, porque sus cuerdas vucales fueron afectadas (esperamos temporalmente) por el ventilador que la habian colocado en la garganta. Julie me dijo que podia darse cuenta de que Daniel estaba llorando, pero no hacia ruido. Ya que no podia sacar ni un sonido. Se las arreglo para quitar el monitor de control de oxigeno de sus dedos de sus pies, y trata de quitar los otros tubos y mil cables en los que esta conectado. Intento susurrar que tenia sed, pero no puede beber ni comer. Por favor oren para que este mas tranquilo, que las enfermeras tengan paciencia, que el Señor sustente a Victor y Julie y por supuesto la continua sanidad de Daniel. Julie espera recibir mas informes del doctor. Les agradecemos y apreciamos sus continuas oraciones.

Justo cuando iba a publicar esta informacion, recibi mas informes de Julie. El doctor informo que uno de los riñones de Daniel esta inflamado. Esta recibiendo medicamentos para la inflamacion. Cables de Dialysis fueron insertados durante la cirugia en caso de ser necesarios. Por favor oren para que el Dialysis no sea necesario. El otro tema que se desarrollo, es que Daniel esta teniendo dificultad para respirar por si mismo. Por favor oren para que no sea necesario volver a colocarle el ventilador. (Les agradece la Mama de Julie)  

Tuesday night update/Las noticias del martes

Para español vayan hasta la parte de abajo…después de las fotos, por favor.

Where to start?  The latest update?  The story since surgery yesterday morning?  (Was it only yesterday?) Of  how Dr. Palacios did two surgeries in one?  How about the story since we came to the hospital on Friday?  Or maybe I should start four years ago when we started looking for a hospital and surgeon to treat Danny?  Then there's the whole story of how God used a friend of ours, Simone Canales, an organization in England and a secretary in Texas to get us to the National Pediatric Institute in Mexico City.  However, that wouldn't make as much impact without hearing how Danny joined our family from the indigenous village in the hills of the state of Veracruz.  Or maybe I need to include a medical description of his multiple heart defects, the largest being that of having only half a heart, to fully appreciate the miracle that God is performing using Dr. Palacios' hands!

Hmmm, maybe I should just start writing the book.  But, since it is 9:46 p.m. and the idea was for me to rest tonight, here's the latest update!

I am writing from Richard and Susana's apartment only 3 minutes from the hospital while Victor is staying on the floor of the ICU waiting room.  Who are Richard (Ricardo and Susana)?  That will have to be around chapter 7 of the yet-to-be-written book!

Back to the update:  we finally got to see Danny for the first time since sending him into surgery yesterday morning.  They let us into ICU around 4:45 p.m. today for a total of a half an hour...15 minutes for me and 15 minutes for Victor.  The last 32 hours of sitting and sleeping on a metal-slatted bench was so worth seeing him for just 15 minutes...touching him, kissing his fingers.  Wow!  Seeing him for the first time, despite all the ICU television images running through my head and all my efforts at preparing myself, resulted in instant tears...of joy at watching his little chest rise and fall, of pain at seeing the innumerable amount of wires coming out of him, of wonder that he is alive and that we actually did surgery after four years of searching, of hope at bringing him home, of fear of not bringing him home...yeah, there were tears!  

However, it didn't take long for me to realize that he was semi-alert, so I did my best to turn off the shaky voice and talk to him.  I told him about all of you that are praying for him, about his siblings waiting for him, about how much I loved him, about Jesus being with him, about how handsome he looked.

Danny is on a ventilator and, while they tried to take him off of it today, that was not possible.  His oxygen saturation rates dropped immediately so they hooked him back up again. They are giving him 100% oxygen, which means the machine is the one making sure that Danny has enough oxygen, not his own lungs.  He has fluid in one lung, which is complicating that whole process.  However, the fluid is in the process of being drained.

The doctor referred to Danny's IV tower as a Christmas tree as there are over a dozen different medications being pumped into his body.  Three of those medications are the ones instructing and keeping his heart beating properly in order to sustain a healthy blood pressure.  Without those medications he is unable to maintain a blood pressure.

Danny has four chest tubes draining blood and fluids from inside his body on out...two from his lungs and two from his chest cavity.  Yesterday those tubes where draining 120 milliliters of blood per hour, hence the reason that we were unable to see him last night.  Praise the Lord that the bleeding has lessened considerably this afternoon.

He has several catheters going directly into several arteries to measure his blood pressure directly in the vein, as well as a catheter in his bladder.  

Despite all the wires and being under the influence of several drugs for pain and to keep him quiet, as soon as he heard my voice his eyes fluttered and I knew he was hearing me.  A few minutes into my monologue, I asked him if he wanted to go camping after leaving the hospital.  I was sure I saw him nod his head, but I couldn't believe it, so I asked again:  "Danny, do you want to go camping after getting out of the hospital?"  There was no mistaking the nod in response to the repeated question!  At one point, I said that Mommy was going to go get Daddy and he proved his ability to shake his head "no" as well as nodding!  It wasn't so much that he didn't want Daddy as that he didn't want Mommy to leave!  So, I stayed and sang "Jesus Loves Me" to him in Spanish and English, which I have done every night for the last four years, and he totally opened his eyes wide!  And, guess what?  The whites of his eyes were....white!  Not red and bloodshot like usual!

Then, I cradled his fingertips in mine and he promptly moved his hand to make sure that I was holding his whole hand and he never took it out of mine until I had to leave!  AND, his fingernails are actually pinkish instead of blue!

I can't wait to see him tomorrow!

The doctor reminded me several times that Danny is in very critical condition and that the entire scenario could change at any moment...so, keep those prayers coming!  I can literally feel the peace flowing straight from heaven's throne and into our lives and I can see the miracles and healing flowing into Danny!

Here are some happy pre-surgery pictures to enjoy!

(Note: I do not have internet in the hospital, so when I head back there tomorrow morning you will be getting updates from my mom, who is at Refuge Ranch helping to hold down the homefront and communications. So, keep checking the blog, or Facebook (Julie Zaragoza)  to see how things are going.)

Disfruten estas fotos antes de la cirugía.

Victor and I left a message written in peanuts for our kids since we left very early on Friday for the hospital.  "We love you kids!"

Victor y yo dejamos un mensaje escrito en frijoles para nuestros hijos ya que nos fuimos bien temprano el viernes al hospital.  

Danny happy in his hospital bed...no wires yet! 

Dany feliz en su cama de hospital….sin ningun cable ni tubo todavía. 

The view from Danny's pre-surgery hospital room.

La vista desde el cuarto que ocupó Daniel antes de la cirugía. 

OK, so I can't get this picture turned around, so lay down and look at it!  Danny's floor is the only floor of the hospital with an incredible playroom set up by an independent foundation....toys, books, movies, puzzles...he loves the place!  It kept him busy the three days he was hospitalized pre-surgery...and saved Vero's sanity as she cared for him two of those days and one night!

OK, no puedo hacer a esta foto voltearse, así que tendrán que recostarse de lado para verla.  El piso de Daniel en el hospital es el único piso con un cuarto increíble de juegos, patrocinado por una fundación privada…juguetes, libros, películas, rompecabezas…¡le encanta ese lugar a Daniel!  Lo mantuvo ocupado los tres días que estuvo hospitalizado antes de la cirugía…y salvó a Vero de volverse loca ya que lo cuidó por dos de estos días y una noche.

The play room - thank God for the people that had the vision to do this!

El cuarto de juegos..¡gracias a Dios por las personas que tuvieron la visión de hacer eso!

The dots on Danny's chest are the marks for the surgeon to follow for the initial surgical incision....so, to be a heart surgeon, all you have to do is connect the dots.  Those kindergarten workbooks are really important!  :-)

Los puntitos en su pecho son las marcas que el cirujano tiene que seguir al hacer la primera incisón de la cirugía…así que, para hacer cirujano de corazón solo tienes que saber juntar los puntitos.  ¡Esos libros del kinder son sumamente importantes!

Danny in his room waiting to be taken to surgery.

Dany en su cuarto esperando que lo lleven a cirugía.

Danny and I just a few minutes before going into surgery.

Dany y yo unos minutos antes de cirugía.

Dr. Palacios coming to talk to us right before heading into surgery.  By this time, Danny had been in the operating room for two hours getting his catheters put in and the rest of the preparations in place for Dr. Palacios' blessed hands to work their God-guided miracles.

El Dr. Palacios acercandose para platicar con nosotros una vez maz antes de entrar al quirófano.  Para entonces, Dany había estado en cirugía unas dos horas mientras lo dormían, le ponían los cataters e hicieron otros preparativos para que las manos bendecidas del Dr. Palacios pudieran obrar esos milagros dirigidos por Dios.

¿Dónde comienzo?  ¿Con las últimas noticias?  ¿Con la historia desde la cirugia de ayer?  (¿Fue apenas ayer?)  ¿De cómo el Dr. Palacios juntó dos cirugías en una?  ¿O, qué tal la historia desde que llegamos al hospital el viernes?  ¿O, a lo mejor debo empezar desde hace cuatro años cuando empezamos a buscar un hospital y cirujano para Daniel?  Luego está la historia de cómo Dios usó a una amiga nuestra, Simone Canales, una organización en inglaterra y una secretaria en Texas para hacernos llegar al Instituto Nacional de Pediatria en la Ciudad de México.  Pero, esa historia no impactaría tanto sin escuchar cómo fue que Dany se unió a nuestra familia desde su pueblo indígena en los cerros de Veracruz.  O, puede ser que necesito incluir una descripción médica de sus múltiples defectos de corazón, el más grande siendo el de tener solo la mitad del corazón, para apreciar completamente el milagro que Dios está haciendo por medio de las manos del Dr. Palacios.

Hmmmmm, a lo mejor debo empezar a escribir el libro.  Pero, ya que son casi las 10:00 p.m. y la idea era que descansara hoy, aquí están las últimas noticias.

Estoy escribiendo esto desde el departamento de Ricardo y Susana a unos 3 minutos del hospital mientras Victor se queda a dormir en el piso de la sala de espera de Terapia Intensiva.  ¿Quiénes son Ricardo y Susana?  Eso se explicará como por el capítulo 7 del libro que todavía falta por escribir.

Bueno:  finalmente pudimos ver a Dany por primera vez desde que entro al quirófano ayer por la mañana.  Nos dejaron entrar a terapia intensive alrededor de las 4:45 p.m. por una media hora…15 minutos yo y 15 minutos Victor.  Las últimas 32 horas de sentarnos y dormirnos en las bancas metálicas valieron la pena por esos 15 minutos de verlo, tocarlo y besar sus deditos.  ¡Wow!  Verlo por primera vez, aunque habia visto las escenas en los programas de television y aunque me esforcé en prepararme, resultó en lágrimas…de gozo de ver su pechito subir y bajar, de dolor de ver tal cantidad de cables y tubos saliendo de él, de maravilla de que está vivo y de que, después de cuatro años de espera, se hizo la cirugía, de esperanza de llevarlo a casa, de miedo de no llevarlo a casa….sí, hubo lágrimas.

Pero, no tardé en darme cuenta que estaba medio despierto, así que hice mi mejor de apagar la voz temblorosa y platicarle.  Le conté de todos Uds. que están orando por él, acerca de sus hermanos que lo están esperando, de cuánto lo amo, de como Jesús está con él, de qué guapo se veía.  

Dany tiene un respirador y, aunque lo intentaron retirar hoy, no fue posible.  Su saturación de oxígeno bajó inmediatamente así que lo tuvieron que volver a conectar.  Le están administrando oxígeno al 100%, lo cual quiere decir que es la máquina que se asegura de que Daniel tiene suficiente oxígeno, no sus propios pulmones.  Tiene líquido en un pulmón, pero lo están en proceso de drenarlo. 

El doctor llamó a la torre de máquinas de suministro de medicamentos un “árbol de Navidad”, ya que Dany está recibiendo más de una docena de medicamentos y cada uno usa su propia máquina.  Tres de estos medicamentos son los que están manteniendo su corazón latiendo correctamente y con una presión sangúinea adecuada.  Sin estos medicamentos su cuerpo no puede todavía mantener una presión aceptable.    

Dany tiene cuatro tubos saliendo de su torax para drenar la sangre y los líquidos que allí se acumulan…dos de sus pulmones y dos de su pecho.  Ayer estos tubos estaban drenando 120 mililitros de sangre por hora, y por eso no lo pudimos ver el día de ayer por la noche.  Alabado sea el Señor que el sangrado se ha disminuido bastante hoy por la tarde.

Él tiene varios cateters entrando directamente en algunas arterias para medir su presión sanguínea directamente en la arteria, además de una sonda.

No obstante todos los tubos y el estar bajo la influencia de varias drogas para el dolor y para mantenerlo calmado, en cuanto escuchó mi voz, sus ojos se movieron y yo sabía que me estaba escuchando.  Después de varios minutos de mi monólogo, le pregunté si quería ir a acampar después de salir del hospital.  Estaba segura que lo vi mover su cabeza, pero no lo podia creer, así que pregunté de nuevo:  “Dany, ¿quieres ir a acampar cuando sales del hospital?”  No hubo equivocación…estaba moviendo la cabeza que “sí”.  Un rato después le dije que ya me iba para que Papá pudiera venir y confirmó que también podía sacudir la cabeza que “no”.  No era tanto que no quería a su papá, era que no quería que Mamá se fuera.  Así que, quedé tantito y le canté “Cristo Me Ama” en español e inglés, lo cual he hecho casi cada noche por cuatro años. Cuando escuchó la canción, ¡abrió sus ojos por completo!  Y, ¿adivinan qué?  ¡Lo blanco de sus ojos era blanco…no rojo como siempre!

Luego, tomé sus deditos en los míos y él rápidamente acomodó su mano para que yo lo estuviera agarrando bien. Nunca quitó su mano de la mía.  Y, ¡sus uñas eran rositas en vez de azules!

¡No puedo esperar verlo mañana!

El doctor me recordó varias veces que Daniel está my grave y que todo puede cambiar en cualquier momento…así que, ¡sigan orando!  Yo puedo sentir, literalmente, la paz fluir directamente a nuestras vidas desde el trono celestial y puedo ver los milagros y sanidad fluyendo en Daniel.