The GOOD, The BAD, The UGLY

Sorry it's taken me a few days to put this post together. I haven't had the heart to get some of this down in writing. I apologize to all our faithful followers.

THE GOOD
~Having Gilly come in on Friday afternoon and spend the weekend with us. Ry loves her daddy so much and she really brightens up when she sees him.
~Hearing Ry be her chatty self, if even for only a few minutes a day.
~Ry wanting to hold my hand when she's scared.
~All of the friends and family we've connected with and have supporting us through this. It is overwhelming how much love has been poured out to us.
~Reading our blog comments, emails, FB messages and letter from those who love us and many whom we've never met. Thank you. Each one is special and will be shared with Rylynn one day.

THE BAD
~Ry is still battling fluid build up on her lungs. This mornings Xray was worse than Saturdays. They will run another tomorrow to see if we were able to diarese any of the fluid off. She's already on fluid restrictions and a whole set of diaretics so we've mazimized pulling them off in that manner.
~Still no sleep at night! Even with a sleep aid and a little morphin... only a few hours of sleep is all she had of restful sleep. The team is addressing this more aggressively now because her body needs the rest. (And I wouldn't mind a little rest myself.) It was great having Gilly here this weekend so we could take turns sleeping. I hope the Ambien they gave her tonight works or else it's going to be another rough night.
~Ry has not had an appetite in days. Tonight we are having to begin night feeds again. Good nutrition is so important for her right now and this seems to be the only way to get it.
~The canula sites are still pretty inflamed. Although yesterday seemed better, I think today's was worse. (Could be a lack of nutrition.) So I'm hoping that it will start to clear up in a couple of days. The anitibiotic that they gave to ensure that an infection does not set in is tearing Ry's tummy apart. We've had some really bad diapers one that included a dressing change because her's got soiled.

THE UGLY
I have avoided posting since Friday because I just didn't have the heart to do it. We waited anxiously for the PRA results. They aren't good. Actually, they are quite bad. I don't want to get into the protiens and the antibodies and how they work or what they mean, but this is what it boils down to. Before the blood transfusions and the VAD, etc. Ry's PRAs were 24 and 58 at two different stages. Now, after her transfusions her numbers came back at 89. (100 is the highest number) This means that we went from being able to accept 45-50% of all donor hearts to now only 10% or less. This was a major kick in the gut.
This does not is any way affect her current health condition. This only affects her odds of ever receiving a transplant. Or of receiving a good match. The team has sent off for some second opions and for more indepth look at the break down of her antibodies. We are praying for some brighter information.
There have been two other kids in Ry's exact situation on this campus that waited for a year and waited for nine months who did not receive a match in time. I wish there were some examples of those kids who walked this road and turned out great, but currently there is none. Ry has always taken us down her own path, I pray she leads us on her own unpaved path to a happy ending.
I was so thankful to see Gilly on Friday evening. He gave me a hug and told me that it only takes one heart and that we are still waiting and hopeful. I needed a kick in the pants after a long week to tell me to keep my chin up for Ry. (Its pretty bad when the docs come to deliver the news and then send the chaplain and psychologist by for a visit.) We went from smiles and hopeful feelings of a transplant around the corner, to condolences and hugs from the team... I don't really know how to take all of that??
After getting the second opinion they asked for, we will meet again this week to see where we stand and what are options are.

Once again, we're not giving up. God has led us to this place and we pray he takes our hand and continues to walk with us.
Please say an extra prayer that Ry feels better soon. It is breaking my heart to see her uncomfortable. And once again thanks for all the prayers and love so far. We love you all!