Good Afternoon 🌲❤️TEAMNICK❤️🌲 

I will start by saying Nick is doing okay and his liver numbers are down significantly. His bilirubin is normal. This is because his biliary drain is uncapped and his bile is flowing into a bag outside of his body. This is not ideal for a few reasons yet is currently a "necessary evil" because it keeps him from cholangitis. It is however important that he can eventually be rid of these tubes. His prognosis is amazing and, being a 30 year old fellow, he has a long life ahead of himself.  There are doctors here committed to figuring out the best path forward that can rid him of the need for the g-tube and biliary drain and get him back to a pain-free, tubeless, eating & happy life.

We had thought the current plan was to A) keep the biliary drain uncapped B) let the liver recover C) manage pain as best we can D) continue to treat infection from bile back up when he was capped and E) aim for going home on Monday. 

However, a surgery resident, Luis Ruffolo -who is on Dr. Tomiyama's team,  just came into Nick's room, pulled up a chair and had a major discussion about all things related to the duodenal and biliary strictures. Dr. Ruffolo said he does not recommend Nick go home with these drains and his body losing so much of its natural fluids.

He is trying to get a round table sit down with Nick's team, GI, IR, Dr. Tomiyama to discuss all of the possibilities. He strongly recommends trying to put in a j/g tube. That is a tube that goes into his g-tube and through his duodenum, then passes down into his gi system where it can funnel actual liquid formula nutrition so that Nick can get stronger & healthier AND off of the tpn, If this can be successfully done and Nick can have real nutrition for a few weeks he might be a more ideal candidate for a surgery that would aim to solve the stricture issues. 

Deep breaths over here as we begin to process this confusing information. Dr. Ruffolo was clear that he still needs to hear from the elusive IR & GI people, as their opinions matter and will help formulate the best plan to address this most complex case. 

I imagine you all are having some degree of challenge in following along, as are we and we are hearing this all first hand. I am doing my best to repeat, but it is a challenge. I have no idea how people who are alone navigate such health concerns. It must be overwhelming. I am very glad I was here when Dr. Ruffolo happened to come in. We had no advance knowledge that anyone was coming by to discuss potential strategies, nor did Nick's transplant team I think, as they had already been in just a short time before and they were on board with aiming to send Nick home on Monday. They really seem to have no strategic input regarding Nick and right about now we are left feeling a bit like no one really OWNS Nick's care. I hope that that feeling changes, but it is unsettling to have a new-to-Nick-doctor stop by and talk about such significant things and then leave as abruptly as they appeared. 

We sit here in this room having NO IDEA what comes next and even who knows what. Previously even though many different specialists weighed in, we always had a sense that Nick's transplant team was OWNING Nick's care and knew all of the potential and actual relevant moving parts. If anything seemed confusing, we knew who to talk to to get clarification. That is missing for us right now. Nick has no one to tell him if he should be bracing for a longer hospital stay that involves j/g-tube placement and then eventual surgery, or if he would be allowed to go home between j/g placement and come back after some weeks for a surgery, or if he is going home on Monday. His brain must be swirling as mine certainly is. 

I will push for better communication regardless of whether deeper clarity can be had right now. 

I am sure you can all sense the frustration we are feeling. In the meantime, Nick's pain patch was significantly increased to see if that could address his pain adequately and without need for IV or oral med load on his stomach. He is extra sleepy today and I asked if his pain patch amount could be decreased as he needs to be able to engage in conversation. I know from a palliative care perspective it is a delicate balance in trying to manage pain and yet not overly sedate. 

Boy, it would be so great if a surgery could solve the problems caused by these strictures. 

Prayers and beams and lots of love appreciated for our most dear Nick. May his medical team communicate, ideate and find a path forward to get Nick feeling truly well. 

Sending love from WCC6-Rm 21 on day +127 to all-

🌲❤️TEAMNICK❤️🌲 

🦊🌲BeRelentless🌲🦊