Before his diagnosis, Lincoln was always a good eater and great at gaining weight. However, with ascites, weight can increase without there being actual nutrional growth. On one of our last appointments in Alabama, the team measured Lincoln’s upper arm, which is a much more accurate measurement of growth in children than weight, which can fluctuate with water losses and gains. Our first time at Duke, another measurement was taken. This number was lower but since we changed facilities and it was someone different doing the measurement, the team let it slide. On June 18th, his arm measurement was even lower. So, the dietician suggested we supplement Lincoln’s feeds. Given Lincoln’s liver transplant work up had already started and his application for transplant would be submitted to insurance and hopefully sooner rather than later be put on the UNOS transplant list, the team decided to supplement Lincoln’s nutrition through his veins rather than through his stomach.

A tube was placed in his nose to give him concentrated food until a central line IV that goes through a bigger vein than a normal IV would be able to be placed to really give Lincoln some high calorie food. He got about two days of feeds before he said enough was enough and he pulled out this tube. Of course, he was the happiest guy after the tube was out. On June 24th, he got the central line that would be able to feed nutrients directly into his veins. Luckily he is able to breastfeed while on this to continue bonding and maintain his development. Now, he is on continuous nutrition and is getting diuretics as he tolerates to combat how much fluid this nutrition adds to his circulatory system.