TestifyToLove
New member
The CF center gave up on trying to manage M's fat soluable vitamins first of July. They don't currently have a GI on staff and after 18 months the Nutritionalist had simply tried everything she knew to try.
M's Heptalogist has mentioned the possibility of moving to monthly IM injections to get his vitamins up. But, he refuses to make the call because he insists he is NOT a GI. And well, you just don't argue with the Dir of the Trasplant Clinic that he did in fact start as a GI and if its the liver causing the GI issues, then it might ctually make sense for him to just make a judgement call and everyone else will follow his lead.
So, I was not prepared to the appointment to be a big, big deal. I am grateful that I insisted DH go with me because he was the one who had had the discussions with the Heptalogist.
What we discovered is that M lost 1.5lb and 5% on his growth curve in 6 weeks. His belly is swollen. She thinks his increased refusal to eat food is because his tummy hurts. And, for the first time, his liver is now swollen across the midline of his stomach. Both the pancreas and liver appeared enlarged from when she saw him in March.
She has decided that the low vitamin levels are the same issue as the rest. And since the Heptalogist stated 3 weeks ago that he believes M's liver is having issues synthesizing, she thinks that is what we are looking at across the board.
In short, after holding steady for 4 years, his liver disese is now progressing. We are to stop his supplementl Pediasure immediately. She thinks that's harsher on his gut and liver than regular food. We are now bolusing 2 cans of a pre-digested formula daily as his calorie boost. In addition, any meal he rejects, we are to bolus 2 cans immediately as a meal replacement. She is hoping that this formula will tax his liver and gut less, allow him to obtain the necessary nutrients better and save liver and gut function he does have for the important work of absorbing his fat soluble vitamins.
In short, she pointed out that he is "A Liver Child" and this is the path of progression for this.
I knew it would come to this. I guess I just figured it would happen more gradually. But, I knew there was an issue first of July. I was shocked they caught a weight gain because he started refusing meals in June. I'm grateful we caught it so unbelievably quickly but I'm heartbroken that we've definitely taken a big step towards the liver failure. He is now g-tube dependent (at least partially) unless and until he gets a liver/small bowel transplant.
If there is a bright side to this, in the same letter where his Heptalogist formally admitted this is a synthesis issue with his liver, he also officially reversed his stance of a year ago when he stated that M was not a candidate for a new liver. If we can maintain his lungs as well as we have, he feels M is a candidate for a new liver..but he will require small bowel with it. So, there is hope for this M's future.
M's Heptalogist has mentioned the possibility of moving to monthly IM injections to get his vitamins up. But, he refuses to make the call because he insists he is NOT a GI. And well, you just don't argue with the Dir of the Trasplant Clinic that he did in fact start as a GI and if its the liver causing the GI issues, then it might ctually make sense for him to just make a judgement call and everyone else will follow his lead.
So, I was not prepared to the appointment to be a big, big deal. I am grateful that I insisted DH go with me because he was the one who had had the discussions with the Heptalogist.
What we discovered is that M lost 1.5lb and 5% on his growth curve in 6 weeks. His belly is swollen. She thinks his increased refusal to eat food is because his tummy hurts. And, for the first time, his liver is now swollen across the midline of his stomach. Both the pancreas and liver appeared enlarged from when she saw him in March.
She has decided that the low vitamin levels are the same issue as the rest. And since the Heptalogist stated 3 weeks ago that he believes M's liver is having issues synthesizing, she thinks that is what we are looking at across the board.
In short, after holding steady for 4 years, his liver disese is now progressing. We are to stop his supplementl Pediasure immediately. She thinks that's harsher on his gut and liver than regular food. We are now bolusing 2 cans of a pre-digested formula daily as his calorie boost. In addition, any meal he rejects, we are to bolus 2 cans immediately as a meal replacement. She is hoping that this formula will tax his liver and gut less, allow him to obtain the necessary nutrients better and save liver and gut function he does have for the important work of absorbing his fat soluble vitamins.
In short, she pointed out that he is "A Liver Child" and this is the path of progression for this.
I knew it would come to this. I guess I just figured it would happen more gradually. But, I knew there was an issue first of July. I was shocked they caught a weight gain because he started refusing meals in June. I'm grateful we caught it so unbelievably quickly but I'm heartbroken that we've definitely taken a big step towards the liver failure. He is now g-tube dependent (at least partially) unless and until he gets a liver/small bowel transplant.
If there is a bright side to this, in the same letter where his Heptalogist formally admitted this is a synthesis issue with his liver, he also officially reversed his stance of a year ago when he stated that M was not a candidate for a new liver. If we can maintain his lungs as well as we have, he feels M is a candidate for a new liver..but he will require small bowel with it. So, there is hope for this M's future.