Westen has had an adventurous past week.
Saturday, August 30th we needed to take Westen to the ER at Children’s because his feeding tube was pulled out and he was throwing up his feeds. He was given a new feeding tube but had to be seen again to have it bridled – a loop around the bone in the nose so the tube cannot be easily pulled out.
On Monday, September 1st, Westen had labs drawn (this is usually done every 2 weeks for Westen, sometimes more often) and had an appointment with his liver doctor. We have been so pleased with everyone we have met that has been involved in Westen’s care. He was able to have his NG tube bridled at this appointment (he was not happy at all), and we finally received some good news! Westen has gained a couple of ounces, which for him is a lot and is allowing us to continue with feedings through the tube. IV nutrition is on hold for now. Westen’s labs unfortunately continue to worsen. He is not quite ready for listing on the liver transplant list since he was diagnosed with parainfluenza 3 weeks ago. He needs a full month before they can consider putting him on the list.
In the meantime, Westen will see cardiology to rule out any concerns or conditions and clear him for transplant listing. He was evaluated by neurology at Children’s on September 2nd to be cleared from seizure activity and the episode he had at daycare 3 weeks ago. In the following weeks they have ordered him to have an EEG (records electric activity in the brain), MRI, MRA and MRV of his brain. With Alagille Syndrome, some patients have changes in the blood vessels in their head and neck which can lead to health problems like strokes. They want to rule these possibilities out. These steps are to help us get Westen closer to being put on the transplant list.
On October 1st we are supposed to receive a phone number to pass along to anyone considering living donation. This will allow to start the screening process for living donors for Westen through Froedtert (they will not be prepared to start screenings until October 1st). Generally speaking, those considering living donation need to be healthy, alcohol and substance use free, not pregnant within the last year, and over 18 and under a certain age (determined by the surgeons). There is typically a weight range as well. This being said, if Westen is approved to be on the transplant list on September 15th, and a deceased donor becomes available, they will accept that and move forward instead of waiting. They did let us know there are two other children with his blood type also waiting for livers, we are not sure who is more in need.
Thank you for all the continued prayers, thoughts, support, donations to COTA for Westen, and the texts and phone calls. It does not go unnoticed.