Tuesday, January 11, 2011

Not what we wanted to hear

On Wednesday maybe Thursday, we got a phone call from Pittsburgh saying they wanted to see us on Monday instead of waiting two weeks. They wanted to get Lynlee in there, get her blood work, and they wanted to talk to us about Liver Cell Transplant.

Of course I started getting all the info I could on the liver cell transplant. Why would they want to try that after all this time? Has anyone done it? Could it be a cure?

Well to answer all those questions. It has been done and it's usually done as a hold off until you can get a liver. They go in and put cells into the liver hopefully (which has never worked other than rats and monkeys) to rejuvenate the liver cells and the liver is cured. If (or more likely WHEN) the cells go bad you either do the procedure again or get a transplant.

But my main question is why Lynlee? Why now? Well that was answered yesterday and in a way I didn't want it to be. I've always said I never wanted to talk transplant unless Lynlee becomes uncontrollable and that is our last resort to save her life.

Lynlee's ammonia was 91 yesterday. Not good at all. They are making some changes in her formula, they have her on an antibiotic in case there is an infection in her gut that isn't showing, we are doing more test. But after it's all said and done they feel like she is on the edge of instability.

They want us to get a liver evaluation immediately and hopefully we never need it. But if in two weeks what they have done isn't working we need to act quickly to make decisions for Lynlee.

We can try the liver cell transplant or we can just transplant the whole liver.

It's scary! We know that her levels cannot stay a 91. They can for a while but after so long brain damage can occur. We have to get it down and keep it down or we have to transplant.

So I'm asking each of you that read this to keep Lynlee in your prayers or whatever higher power that you believe in. I myself believe in God. I pray that a decision does not have to be made that her levels stabilize and stay that way. I also pray that if a decision has to be made we make the right one for her.


  1. Stacy; Please know you are in my thoughts and prayers. Lynlee is such a special little girl. I pray God touch her and heal this problem and it will not return. I pray God give you wisdom in making decisions, and give you comfort in your heart. We love you. Glenda

  2. Sweetie I know how heart wrenching this must be. I can't even imagine what you are going through much less your baby. I will keep her and you in my thoughts and prayers. Terri

  3. Everything will work out. Get your thoughts together, do a lot of praying, get a second opinion pronto and then make your decision. Whatever you choose to do will be the best for Lynlee. You will get through this!