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)