so far behind in updaing. . . sorry

I'll make this as short and sweet and possible.Monday I made an appointment for Ry to be seen by the transplant team because Gilly and I felt she just wasn't herself, she had really been working to breath and had some real puffiness.We were seen, labs run, echo done. Doctor's saw some small elevations in her labwork and did not like the labored breathing. They decided to admit her, go up on her milrinone (IV med), and tweek her diaretics. We were not thrilled about having to increase her milrinone to 1.0 because this would now mean that she would be maxed out on the medication and if there were any other changes over time we'd have to resort to other medications or even more invasive procedures to maintain her function.Only hours later, once some additional labwork came in we faced a different scenario. Just as we were getting settled into our room and all of Ry's favorite nurses were coming in to say hi, I was asked to step into a supply closet to talk with a doctor. It turns out that Ry's liver was very unhappy and on the brink of failure. At this time, they did not think that any combination of drugs could help her heart function enough to support her liver. So this left us two options. First, we try medications and pray a heart comes within days/hours. Our second option would be to proceed with a mechanical device called a VAD (ventricular assistant device) which would be surgically placed. I do not have the time to elaborate on the device so I'll let all you curious individuals google it. Beware that most of the data you will come by in based on the device used for adults with a normal heart anatomy. For a pediatric single ventrical patient, things are very different. In fact, the device is not even FDA approved for use in pediatric patients. I also will not go into the overwhelming risks and side effects that we'll be facing. However, at this point it is our only option.
Ry has been stabalized, the equipment has arrived, consents have been signed and Gilly and I have given our blood directly for her. The only thing that has not been done is booking the OR. Doctors have recommended that we watch her hour by hour and wait for a few other things to fall into place.
We are praying with each passing hour that the blessing of a donor heart might come. Your prayers have lifted us through so many difficult times before, please help us now. We pray that God protects Rylynn and keeps her safe. We pray that our earthly timing is as God has planned. We pray for the caregivers who watch over her. And mostly, we pray for the miracle of the a heart.