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)