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10/3/2017 Latest post:
Trenton is four years of age and was born premature with some complications. He spent one year in the NICU, but was discharged fairly healthy and really blossomed from there. In April of 2016, he was deemed developmentally on track and was gearing for preschool and kindergarten. In May of 2016, Trenton underwent a procedure to remove his gall bladder. During this procedure, there were unexpected and significant complications. Trenton spent 9 months in the hospital recovering from the effects of this surgery. At one point in those 9 months, he was in kidney and lung failure, but responded extremely well to treatment and recovered. In October of 2016, he was diagnosed with stage 3 liver fibrosis which was progressing rapidly and killing his liver. We were told he was in need of a transplant.
In February of 2017 we were discharged from the hospital and started to prepare for a liver transplant. During the transplant process, Trenton started to have some complications with his heart. We aggressively started treatment for his pulmonary hypertension and cardiomyopathy. This treatment progressed his liver failure significantly and had significant side effects including pain and discomfort. We met with the transplant team last Friday, September 15th. They informed us they were not going to move forward with transplant as they did not believe Trenton would survive the surgery. We were advised to start discontinuing treatment medications that have caused him discomfort and transition to a comfort plan versus a treatment plan. We have started this transition and are starting to work with home hospice to ensure Trenton is happy and comfortable as he continues to decline. The doctors are not able to give us a timeline as to how much time Trenton has left as he is going through multiple organ failure. We are working on creating as many happy, fun memories while he is still feeling well enough.