Sheriff Sarah

Sheriff Sarah

Monday, March 22, 2010

No Hospital Stay

Just wanted to update those of you not on Facebook that Sarah's biopsy results came back negative Saturday morning. So a hospital stay was not required this go around. Suffice it to say we were thrilled and were able to have a fun day together Saturday, which included family photos. Sarah must still have labs done every week, but that has been the norm so no change there.

Friday, March 19, 2010

Back and Forth

I have begun referring to our lives as the "new" normal. This is especially the case when speaking about Sarah's liver issues. She is still having weekly labs taken and visiting the clinic every other week. Well, yesterday her liver numbers crept back up again into the 100-200+ range. Not quite as high as her last episode that was diagnosed as mild acute rejection. Still, when you are a liver transplant recipient, the doctors make it a priority to insure nothing is happening to the liver itself - no damage, no true rejection, etc - and so, they continually take precautionary measures.

So, after Sarah's clinic visit Thursday afternoon, the docs ordered an ultrasound. This afternoon she will have another biopsy. Hopefully, this won't result in an extended stay. I'm even so bold to pray that they will let the girls come home tonight and call us tomorrow with the results. That is unlikely, but a guy can still hope, huh?

Thursday, March 4, 2010

Nothing on the Ultrasound

The good news is nothing showed up on this afternoon's ultrasound. There are several blood tests the transplant team requested, outside the norm, including CMV, CDiff and Rotavirus. We won't know those results until Friday. While Sarah is acting completely normal, they want to be sure there is nothing causing the frequent diarrhea and pale stool.

Of Stool Color and Bile

Sarah and Patty are at clinic today. Monitoring stool color is one of the things that parents of liver transplant recipients are trained to do, way back even prior to transplant. The color can tell whether there may be something wrong with the flow of bile out of the liver. Since her last hospital visit, Sarah's "pooh" has been very pale, which is 'bad' according to the picture card we have that displays different colors. That's all very interesting to you, I am sure. Stool color. Anyway, she has also had very runny stool (yeah - more fun) and so we were a bit concerned, despite liver labs looking good. Essentially, the pale stool means Sarah is not retaining fat from what she eats.

Patty just notified me the transplant team is going to perform an ultrasound to make sure there is no bile obstruction. They did mention even on our last clinic visit that GI viruses have been going around so it could be something as simple as that.

We will keep you updated with the results later tonight.

Monday, March 1, 2010

Cherish Each Moment

While we are excited about the opportunity for Sarah and our family to further advocate for liver diseases, our hearts are broken today. In this small world of biliary atresia, we have met many families at Seattle Children’s Hospital and online through Liver Families, Facebook and other avenues. As parents who have experienced firsthand the things that go wrong with a little one’s body when a liver does not function properly, our hearts & eyes have been opened greatly to the struggles and pain other families face. The brave little children who have such cheerful hearts in the face of adversity have strengthened and touched us. Sarah has been a trooper through her whole experience but there are others.

One such little girl is Blair. We began following her on the CaringBridge website a few weeks ago on the tip from our good friend (and mother of a BA baby), Beth. Her mother had signed up to be the donor for transplant and things were looking good, full steam ahead. We learned over the weekend that the first transplant did not take and a second transplant was needed. Sadly, little Blair’s body could not stand the wait between losing the first transplant and gaining a new one. She left our world and returned to the arms of Jesus, a beautiful 10-month-old girl who had charmed many people in her brief time on earth. Her parents’ own faith seems to be carrying them, based on their CaringBridge entry. It is in these difficult times we see the greatest blessings in life. While we may not be able to explain why these things happen and treasured little ones are taken away, we do know that even their brief time with us was inspiring and for a purpose. The love we are able to share with them and that they show us is almost impossible to put into words.

Blair is not the only child that has died from liver disease or a transplant that did not take. There are others and this is why our family is so intent on reaching out to other families living through this difficult time. Whether their child is waiting for liver, intestines or other organs; whether they have already had a successful Kasai and are doing well (praise God, we know a few of them!); or whether, they are in dire need of a transplant TODAY, we feel obligated to offer whatever encouragement and support we can.

I am writing this post today as much to help wash away my own grief for Blair and her family – for her two-year-old brother that probably won’t remember his sister – as to remind all of us how precious life is and how important it is to treat each moment with loved ones and friends as if it were your last moment with them. Cherish the minute, the hour, the day. And begin doing it now.

Our Little Celebrity

Will wonders never cease? Today, I received an email from the regional American Liver Foundation office asking Sarah to be their 2010 honoree. She would be said honoree for their Flavors of Seattle Gala fundraiser in April and again for the Seattle Walk for Life in September. The girl is a celebrity and doesn't even know it! Or maybe she does.

What a blessing this is for us and it opens the door of opportunity to share more about liver diseases like biliary atresia. God works in mysterious ways.

To find out more about the American Liver Foundation, go to and search by your state or region.