(My wife wrote this on his Facebook page)
We are home and settled in finally. Camden made a very good friend who is awaiting a liver in Milwaukee. They were kind enough to let us stay with them. Let's just say two "Sheldons" in a room can be very interesting.( with Holly Smith) The appointments were long but very helpful. I'll list a few things that were important. The doctors agree that his kidney disease is mild-moderate and liver disea...se is moderate-severe right now. They believe that his liver will cause him to get in to trouble first. They were happy with how well his blood pressure is being controlled. We are going to add a lot more calcium and vitamin D to boost his nutrition. They were ok with his growth currently but will be monitoring it closely. We will be transferring all of his disease care there and work with the pediatrician here for routine labs every 3 months. We will go there at least once a year for now and more frequently as the disease progresses. They do not want him to do any contact sports. We met with the genetic counselor, dietician, and social worker as well. It was very refreshing having doctors just listen to our concerns and look at Camden as a whole person and not just an organ. He will need a dual transplant by early adolescence. On a good note, they are going to be starting a clinical trial in the next couple of years for kids like him for a drug that halts disease progression. It does not reverse damage done but could potentially keep him from going into renal/liver failure. This is in the works and has not been completely approved so we will see what the future holds for it. We made a careplan for him to use as a guide for goals that we want to improve his quality of life. Camden was quite obnoxious while we were there but think he is just bored with that setting. Bottom line.......his liver is more "sick" than we thought but have found the right place to treat it. I felt very comfortable about how blunt the doctors were and they did not try to sugar coat anything. They asked if we were going to move there because of how rare his disease is I really liked the town and the people were very friendly but will stay in the south. The flights delays were quite horrible and spending an extra night in Detroit made it seem like an eternity. Thank you for all the comments, donations, and prayers that made this trip possible.
We are home and settled in finally. Camden made a very good friend who is awaiting a liver in Milwaukee. They were kind enough to let us stay with them. Let's just say two "Sheldons" in a room can be very interesting.( with Holly Smith) The appointments were long but very helpful. I'll list a few things that were important. The doctors agree that his kidney disease is mild-moderate and liver disea...se is moderate-severe right now. They believe that his liver will cause him to get in to trouble first. They were happy with how well his blood pressure is being controlled. We are going to add a lot more calcium and vitamin D to boost his nutrition. They were ok with his growth currently but will be monitoring it closely. We will be transferring all of his disease care there and work with the pediatrician here for routine labs every 3 months. We will go there at least once a year for now and more frequently as the disease progresses. They do not want him to do any contact sports. We met with the genetic counselor, dietician, and social worker as well. It was very refreshing having doctors just listen to our concerns and look at Camden as a whole person and not just an organ. He will need a dual transplant by early adolescence. On a good note, they are going to be starting a clinical trial in the next couple of years for kids like him for a drug that halts disease progression. It does not reverse damage done but could potentially keep him from going into renal/liver failure. This is in the works and has not been completely approved so we will see what the future holds for it. We made a careplan for him to use as a guide for goals that we want to improve his quality of life. Camden was quite obnoxious while we were there but think he is just bored with that setting. Bottom line.......his liver is more "sick" than we thought but have found the right place to treat it. I felt very comfortable about how blunt the doctors were and they did not try to sugar coat anything. They asked if we were going to move there because of how rare his disease is I really liked the town and the people were very friendly but will stay in the south. The flights delays were quite horrible and spending an extra night in Detroit made it seem like an eternity. Thank you for all the comments, donations, and prayers that made this trip possible.
