Update from Westen’s parents:

The last month has been rough for Westen. He had a scare at daycare where he made a gasping noise, went limp, and possibly stopped breathing for what felt like 10 seconds. He was taken to the emergency room at Children’s by ambulance. He spent the next couple of days in the hospital while the doctors ran tests and tried to figure out what happened. He did test positive for parainfluenza – a common respiratory virus that can be more severe in children with weakened immune systems or severe illness. Because of this finding, Westen’s liver team was not able to put him on the national liver wait list. He will need to see neurology as a precaution on September 2nd to rule out seizures from this episode at daycare.

To add to this, Westen has lost weight and his dietitian team is more worried. Westen’s liver disease makes it difficult for him to gain weight (a problem some of us wish we had!) and absorb nutrients. Because of this, they are trialing 30 calorie formula (the highest they can go) through his feeding tube for two weeks. If he does not gain weight during those two weeks, they will need to seriously consider starting him on IV nutrition to help support weight gain by bypassing the digestive system. This would also mean more time in the hospital to get the IV line, start the IV nutrition, monitor how he is tolerating this, and do teaching.

The next few weeks for Westen will bring some really big decisions. August 31st he will meet with his liver team and dietitians to decide if they will move forward with IV nutrition. September 2nd he will meet with neurology. The liver transplant committee at Children’s will meet September 10th and discuss his case. At that time, it will have been one month since his episode and the hope is that he will be approved and healthy enough to be put on the liver transplant list.

At this time, we do not have any new information regarding living liver donors.

Thank you for all the continued support, thoughts, prayers, shares, donations to COTA, texts and phone calls.