48 Hours
We have had a very active 48 hours and are emotionally and physically recovering. First, we’ll start with some good news. We were able to go on vacation to a beautiful spa in Colorado. Afton’s grandparents all chipped in to help take care of her while we were away. We had a great time but were disappointed to hear that Afton needed a liver biopsy the morning after we got home. After the biopsy she then had an MRI. The results showed that her bile ducts were starting to scar which is probably due to some of the initial damage to her liver right after transplant. Keep in mind the doctors expected this liver to fail within days of Afton getting it. It malfunctioned from the beginning but for some reason Afton’s body has adapted to it.
The scarring is causing her bile ducts to narrow and therefore not getting rid of bile as fast as they liked. So we scheduled a procedure to have tubes inserted into her bile ducts and stretch them. The thought was that after 2-3 times of stretching them, there would be a chance of not needing to do that for another year or so.
Afton went into surgery on Wed. After seeing close up what the liver looked like, it was worse than originally anticipated. As a temporary and unexpected solution they decided to have her bile drain outside of her body until they can get a better look into her bowel. Afton came out of surgery with a tube (it’s tiny) coming out of her tummy which connects to a bag that bile drains into. They need to do this for a couple weeks while her insides heal that then they need to go in to take another look.
Soon after this surgery bile was leaking everywhere. Bile is a very itchy material so it was hard for Afton to have so much of this on her skin. To get through the night we had to change her gauze pads every couple hours which included sterilizing her skin, putting gauze pads on her tummy, taping it on, and then wrapping her in a large towel. The towel would start to fill with liquid (blood and bile) within a 1/2 hour. It was super irritating and painful for Afton.
The next morning she went back into surgery and got her tube fixed. We are not exactly sure what they did but it hasn’t leaked a drop in the last day. The bile is filling up quickly in her little bag. Yesterday after they knew that nothing was leaking, she was sent home.
She has really been struggling with her chest and now we have realized that she has possibly had some sort of reaction from all the liquid that was on her skin. She also has chemical burns from all the cleaning. Her chest feels like sandpaper and it is starting to scab. We are hoping that all of this starts to heal soon to give her some peace.
Because of all our frustrations over the last 48 hours, we requested a meeting with Afton’s doctors that know her best and we trust (not any of them were at the hospital this week). We are meeting with them on Wed but have already been given the warning that they are wanting to re-list her for a new liver. This is obviously devastating in many ways but mentally we really had no warning. Three days ago we had a really happy and fun girl on our hands and now she is extremely uncomfortable and in a serious health state.
We need your prayers for us to stay strong and to help give Afton comfort and recover from such a rough couple days.
