Time to Talk

Rounds are difficult. Hard topics. I want to talk about her future, they won't. This morning I pressed. Just a little, just to see.

I was told she had to make it home first. Then she has to live while at home outside of a hospital. String together consecutive months of living, not being sick, not being septic, maintaining line access that is if they can come up with one for us. At which point we would all have to make an objective not an emotional decision. "I know you think you and Dave have already made your decision, but once you make it home it will be time to really talk. Be objective. Its the only way to decide what is best."

OUCH! They will leave all care, concern, love, or emotion out of this. How can you not love my daughter? How? Look at her face, her eyes, her smile and tell me that you are going to be objective and not emotional. You must be made out of something that I am not. I could not look at a child whose life is so full of promise and deny them the only chance they had left. I just couldn't. I guess what hurts even more is the fact that this weeks surgeon is my "friend". The one whom I had convinced myself loved my Ashley. Maybe she does maybe she does not. Who knows. Its her job to be objective and that's how she's going to approach her decision.

If I were created to be objective and not emotional then I would have walked away from our daughter on day one. God didn't design Dave and I like that. He allowed us to fall in love with her years before we ever laid eyes on her. There was no walking away, no giving up, no staying objective. There is still none of that.

I'm not going to kid anyone here. This next 6 months is going to financially ruin us. It is. There is no way around it. We need Omegavin to keep Ashley Kate's liver going long enough to keep her alive to even discuss another transplant. This morning I was told they will file her insurance, but do not expect it to pay for it. They are checking on prices for us, but warned me this morning it would wipe a normal family out. Guess what? We are a normal family. There is not a huge trust fund lying around that we are drawing from. We haven't won the lottery or inherited any level of wealth. We are normal. I have no idea how we are going to pay for this. I truly don't. I do know that we will stop at NOTHING to provide for our daughter. Whatever it takes.
I can't concentrate on that at this point. I've got to concentrate on getting Ashley home. Step 1. Then Step 2 is paying for Omegavin. The whole filing for compassionate use is not the way the team wants to proceed. They located a company in Houston who can disperse Omegavin to us, but it will require a self pay(if the insurance denies) and that we switch all her home health needs to them. Ok, whatever it takes. Whatever we have to do.

Next topic, narcotics. I was told in rounds that Ashley will remain on narcotics for a while. A long while in order to survive. The pain she is experiencing is not expected to go away today, tomorrow, next week, or month. "Several months". We have to figure out pain control outside of the current IV meds she in on. They don't want us accessing her lines for pain control once we are home. I'm beginning to understand a little more each day what they meant in our first week here when they told me she wouldn't be the same little girl and her life would not return to what it was before we came. Again, my heart breaks for Ash. For all of us.

Its a tough place we find ourselves in. It just is. I wan't so desperately to not think of dwell on any of this part of our life. I just want to concentrate on getting Ashley Kate home and loving on our family. Making memories. Cherishing our time together. Either way the decision goes it means months of separation for all of us. If she re-transplants it will take a miracle for her to survive. If she doesn't it will take a miracle for her to continue living. Let me just tell you that as her mommy I can officially announce that this SUCKS! It does. Nothing about this is warm or fuzzy. Its the most horrible thing that could have happened, the loss of her grafted organs. Transplant nightmare. We are living in the middle of it and there is no waking up.

Time to talk. Its been a rough morning for us here in her room. We have a very, very long road ahead of us either way. If she lives its going to be a long time getting her to a point where she gets "her" life back. If she does not then our lives will fall completely apart. Tell me they won't, I don't believe you. Tell me we will survive. I don't want to. We are a family of 5. Its all we know how to be.