Decisions, Decisions

So Dru is still in the hospital. 

Everything is getting back to her "normal" as far as labs go. 

If her labs stay stable for the next 48 hours, she can come home!!!!

It's not really home without her. 

There have been some pros and cons that we have experienced at the hospital in the last 10 days. 

First and foremost I am so grateful for a liver team that wants nothing but the best for my girl. And the fact that they take my concerns seriously earns them some serious respect. 

The fact that they fight for her earns them my love forever. 

The downside of being admitted, is missing the hell out of my boys and our usual routine. We are not used to being apart for too long. Thank goodness for an awesome daddy who does my job better than me. 

I also dislike that Dru's routine is interrupted. Constant meds and tests and blood draws. I know I shouldn't complain because these interruptions are what is keeping her headed in the right direction, so I will go on to say that I absolutely loved all her nurses. They love her and I can tell. And one in particular, Alysha, has become a new friend. 

I was also able to meet a sweet family who were in the room across the hall from us. They just learned that their son has Biliary Atresia. He was scheduled for the kasai procedure in a few days. 

I was taken back to the night we learned that Dru had this disease and all the confusion and heartache that comes at you like a speeding train. I don't know if it helped this family, but it helped me to relate our story to them. I remember scouring the Internet for any blogs or articles about Biliary Atresia. I think it's helpful to have as much information as possible. They are an amazing family and already choosing to be positive. 

That choice makes a big difference. 

Another happy result of Dru being admitted and having kidney issues is that our team was able to appeal for exception points. 

And we were approved 1 day later. Dru now has a PELD score of 40!!

Now I'd really like to celebrate this score and feel hopeful that a liver offer is right around the corner. But...

Our liver team is concerned. 

The average wait time for a liver for a patient with the blood type Dru has is 124 days at our hospital. 

Dru has been waiting 231 days. 

Her size, and the fact that she needs a whole liver, and her portal vein being clotted, combined with our surgeons being on the conservative side are making it difficult for that "perfect" liver to be available. 

The fact that we share a region with California  doesn't help. They take a lot of donor organs because of their population but they don't donate a lot. 

Please, please donate!!!

Because of a lack of donations, there's a chance my baby won't get the liver that saves her life. 

Because of a lack of donations, we have to make the decision to have Dru listed at a transplant center out of our region. Halfway across the nation. 

There is no decision to be made really. I will do whatever it takes to save her life!!!