The biopsy results came in late this afternoon. The fibrosis of her liver was between 3 and 4 on a scale of 1 to 4. She is not a candidate for the Kasai procedure. Her liver is too damaged for the Kasai to have any chance of success. Usually, the Kasai must be performed by 45 days of age for a good outcome. Lenah is 71 days old today.
So here we are again.
Lenah's heart has also been showing sign of loss of function over the last couple of weeks. I haven't mentioned it because they have been kind of "expected" by her doctors as things they typically see between the Norwood and Glenn procedures. This time period for all HLHS babies is a very precarious time period of managing heart function. Lenah does not have the option of looking forward to the Glenn procedure to help improve her heart function. She has one wall of her heart that is not squeezing as well as previously. She also has been having PACs which are not surprising to her doctors and are not particularly concerning at this point. In addition, she has moderate leaking of her tricuspid valve
It is most likely that Lenah's heart will fail before her liver fails.
We could try listing Lenah for a heart/liver transplant. We have decided that is not the right option for Lenah. We do not believe it would be right to take two life saving organs from two other infants. The reality is that heart transplant would extend Lenah's life for a maximum of ten years. Ten years of what. Ten years of anti-rejection medicine and wondering if the next cold will leave her hospitalized or worse. Yes, it could be ten glorious years of enjoying Lenah. Or it could be ten more GLORIOUS years that she gets to enjoy paradise ahead the rest of us. I am more than okay with that aspect of losing her. In fact, a part of me is a bit envious. Don't get me wrong, I'm in no hurry to leave my family here on earth, but I have quite a bit of joyous expectancy of the world to come.
Lenah's doctors and nurses have all been very caring towards us. I believe they are grieving with us. More than a few have become like good friends to me. There is still that barrier of professionalism that good nurses and doctors maintain. But, as time goes on it seems that under other circumstances, there are people here that I could definitely see myself sharing coffee or dinner with or getting together for a play date with our children.
At this time we are working towards getting a private room so there is more privacy for our family and friends to come and visit Lenah. We are also hoping that we are able to wean Lenah off of the ventilator so it is easier for everyone to hold and cuddle Lenah. We will be talking to the hospice coordinator on Monday to discuss our options for comfort care.
Thank you all for checking in on Lenah. Thank you for caring and praying for all of us.