Team Cash - CDG and PICU Warrior

Hi, I am Megan and I am starting a fund for my amazing nephew, Cash, who has been battling complications related to his CDG diagnosis at the Seattle Childrens PICU since late January.

This fund will help Cash’s family pay for medical expenses, travel/food/lodging in Seattle, future medical needs and caregiving as Cash’s condition will require continuing care.

Cash's strength is truly something amazing to behold. He gives light to everyone that meets him. Please help me in supporting this incredible family during this time of need.

For more information on Cash's journey please see below, visit his Caring Bridge site or learn more about CDG here.

We all thank you for your continued support, prayers and thoughts.

An update from Cash's parents on his Caring Bridge Team Cash site:

"On January 20th we took Cash into Doernbecher Children’s hospital to receive infusion and transfusion therapies for his ascites. The first treatment of fresh frozen plasma (FFP) plus lasix did not go as planned. He didn’t urinate in nearly 14 hours and due to the strain on his kidneys his potassium levels escalated to a very high level. On Saturday he was admitted to the PICU. Several days of treatment and monitoring were unsuccessful. The team of doctors worried Cash was having hepatic failure due to high ammonia levels so they began consulting with Seattle Children’s Hospital on whether he needed to be assessed by the liver transplant team.

On January 26th Cash and his mom were Life Flighted to Seattle Children’s. Upon seeing Cash, the doctors were very concerned about Cash’s fluid retention and ammonia levels. His kidneys had stopped working. At 10 pm that evening Cash underwent two procedures to have a central line placed and a Hemo catheter so that he could be placed on dialysis. Both procedures went well and the next day he was able to start Continuous Renal Replacement Therapy.

Four days of being on CRRT showed enough progress that the doctors believed he was ready to try time off the circuit. At this point they ruled out liver failure and started focusing on the strength of his kidneys. But on February 1st, after only 6 hours being off CRRT Cash’s heart rate started to steadily drop and he went into cardiac arrest. The doctors and nurses responded immediately and were able to resuscitate him. His potassium level was dangerously high which is why his heart stopped. This traumatic episode was followed by more monitoring and forced everyone to take a step back to reassess Cash’s treatment plan.

The goal of the past week has been to stabilize Cash and monitor how his kidneys are functioning. Thankfully Cash has remained stable and slowly but surely his kidneys are starting to function. The ultimate test will be how his body tolerates a lower clearance on the CRRT and whether his kidneys can do even more work on their own with more fluid.

It’s an incredibly complex balancing act but we remain hopeful Cash is surrounded by the best team to take care of his body.

We will leave it there for now but hope to update you as soon as we know more about his plan. For now, Cash will remain in the ICU."