Our home away from home

I can't believe it's been a week already from my last post. 

So much happens from day to day. 

It's hard to keep up. 

Earlier this week we had very high hopes that Dru would be able to come home for a few days. Her labs were looking more stable and our doctor was on board to send us home on Monday. 

Monday morning our liver team decided to have an echocardiogram and MRI done while we were still in-patient. This was totally fine with me if it got us home. 

But it didn't. The results of the MRI pretty much sealed the deal that we are official residents of Primary Children's Medical Center until Dru receives her transplant. 

Her MRI showed that she has pockets of fluid in her liver that are possibly causing the blood flow to her kidneys to be restricted and that is causing her kidneys to fail. Our team has to decide if it's worth it to drain some of the fluid from her liver. The procedure is considered invasive and ups her risk of infection. 

Tuesday, Bill came up to visit and was here when Dr. Jensen came in to talk about the possibility of us listing at another transplant center in another region. After a very frank discussion, we ultimately decided that we feel confident staying here, knowing that our surgical team has a very high rate of success and this is where our support system is. If we listed somewhere else, we would have to live there for a minimum of two months. 

The mama bear in me wants to get her anywhere that she can get a liver faster. 

But there are no guarantees. 

And the reality of being away from my boys for 2 months or more on a "maybe" was the deciding factor for me. BUT, I am working on getting our insurance preauthorization done, just in case. 

Yesterday morning, we were sent to imaging for an ultrasound of Dru's kidneys and their blood flow.

So, that was not fun at all. She does not like having to hold still. And she has been stuffy and can't breathe well through her nose so she wasn't loving the binky either. 

Finally, I had to pick her up and sing to her to calm her down. In that moment, even though I was so stressed, I remember feeling so grateful that I could give her comfort. 

It's the only thing I can give her right now. I can no longer feed her, or give her medicine, or even take her for a walk without help. I have felt rather helpless actually.

But I can hold her. I can love her. And boy do I love her. 

After the ultrasound we walked back to her room and some of our liver team was waiting on us in the hallway. They asked how it was going. Because of the feelings I had just had , I just broke down. 

I swear if I had seen them just 5 minutes later, I would have been fine. Anyways, long story short, I cried, I complained, I sucked it up and said we actually feel blessed. We've been lucky that this is our first extended stay. 

Moving on...

Over the last few days, Dru's INR number has been creeping up. Meaning that her ability to clot is not great. So yesterday she received a transfusion to help boost her platelets. She will probably need another one in a few days. 

Also yesterday, our social worker mentioned that most BA babies spend some time in the PICU before transplant so don't be surprised if we end up there soon. 

And then the kidney specialist came in and said they are keeping an eye on Dru's kidneys, and that scary word "dialysis" came up again. 

Man, yesterday was a depressing day. 

Bill stayed the night with Dru last night so I could get some sleep, and I came back to good news. 

1) our surgeons have decided that Dru can accept a larger liver then they had first planned, and

2) one surgeon in particular feels confident about Dru receiving a partial liver. 

And while we are praying that a liver becomes available for our baby, it never leaves our thoughts that our gain comes from someone else's loss. We pray for our donor's family as well.