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)