02.24.2014 @ Kaiser to see Dr. Edward Rich 10 months, this now marks 10 months that Dylan has been dealing with unstable labs/liver inflammation/liver rejection.
We have been in contact with the liver team at LPCH in an effort to see what is going on and what the next plan of treatment is, thus far its just been more meds but the meds aren't working anymore. Dylan is on a big dose of steroids, in fact he's on two different steroids and its not making his liver numbers come down. In the past (previous times prior to this) it has always brought his numbers down and in normal ranges but that's not the case.
Amber and I have suggested that perhaps Dylan is having some form of Autoimmune Hepatitis (AIH), they have more or less dismissed that notion. We have been given a referral to see the Immunology Dept. at Stanford, as mentioned before we all think that Dylan may be having some form of allergy response which could be affecting his cells, which in turn are attacking his liver. We are still waiting to be contacted, we are still waiting for a return phone call, we are still waiting for them to get back to us, and the LPCH team.
Dylan had more labs the other day, its troublesome to see the amount of meds he's on again, as well as the doses, and seeing that none of it is making him better. The longer he stays in "rejection" the more scarring happens.
Yesterday we were at Kaiser to see Dylan's GI doctor (Dr. Edward Rich). We had a real conversation about Dylan's struggling predicament and how he is very uncomfortable with how long he's been in a state of hepatitis. He said he is very concerned for Dylan's liver and the possibility of a very negative outcome if things don't get under control soon. He mentioned it can only go on like this for so long. Amber and I chatted and we requested that Dr. Rich order a MRCP. For those that don't know, a MRCP is: Magnetic Resonance Cholangiopancreatography it's a medical imaging technique that uses magnetic resonance imaging to visualize the biliary ducts with contrast dye. Our reasoning for this is Amber and I think that Dylan potentially has some sort of bile stricture going on. A bile duct stricture is caused by narrowing of the bile duct. The narrow bile duct prevents the bile from draining into the intestine, which causes it to back up in the liver, which causes hepatitis and damage (scarring).
If this is what's going on, this could be the reason he's been on the path he's on. Although this was mentioned to Stanford, which they never even acknowledged that statement. Dr. Rich said he just wasn't sure what potentially is going on with Dylan but that he says something needs to be figured out quickly. Being on high doses of steroids like he is, for one is dangerous, makes him more susceptible to infections, and among other things causes bone issues, diabetes, and some really other nasty stuff.
So Dr. Rich agreed it would be a good idea to have this test done and feels we are either correct in our thinking and/or at min it could rule that scenario out. So he ordered it, we've already been contacted, and Monday at 6am Dylan will undergo the procedure. I know I've said this before but this man is a blessing to us, I feel as though he is one of our family members, as though he understands us, and that he deeply cares for Dylan as well as us as parents...yes he's Dylan's doctor but his sense of compassion is obvious and his meaningful concerns are what are felt, which is rare and it's appreciated.
This marks by far some of the hardest months of our lives. All we seek is answers but yet we are totally in the dark for the most part. Our days pass us by and the next thing we know its been another set of bad labs, more doctor visits, more medical bills, and then we blink and its been another month that we've just barely made it by. With each passing day/week/month we are one step closer to hearing those fearful words, that Dylan's liver is in a state that can't be reversed....this haunts me everyday, every night that I lay awake in bed, its on my mind constantly and not because I'm negative but because that is a reality if things don't change soon.
-Noah
We have been in contact with the liver team at LPCH in an effort to see what is going on and what the next plan of treatment is, thus far its just been more meds but the meds aren't working anymore. Dylan is on a big dose of steroids, in fact he's on two different steroids and its not making his liver numbers come down. In the past (previous times prior to this) it has always brought his numbers down and in normal ranges but that's not the case.
Amber and I have suggested that perhaps Dylan is having some form of Autoimmune Hepatitis (AIH), they have more or less dismissed that notion. We have been given a referral to see the Immunology Dept. at Stanford, as mentioned before we all think that Dylan may be having some form of allergy response which could be affecting his cells, which in turn are attacking his liver. We are still waiting to be contacted, we are still waiting for a return phone call, we are still waiting for them to get back to us, and the LPCH team.
Dylan had more labs the other day, its troublesome to see the amount of meds he's on again, as well as the doses, and seeing that none of it is making him better. The longer he stays in "rejection" the more scarring happens.
Yesterday we were at Kaiser to see Dylan's GI doctor (Dr. Edward Rich). We had a real conversation about Dylan's struggling predicament and how he is very uncomfortable with how long he's been in a state of hepatitis. He said he is very concerned for Dylan's liver and the possibility of a very negative outcome if things don't get under control soon. He mentioned it can only go on like this for so long. Amber and I chatted and we requested that Dr. Rich order a MRCP. For those that don't know, a MRCP is: Magnetic Resonance Cholangiopancreatography it's a medical imaging technique that uses magnetic resonance imaging to visualize the biliary ducts with contrast dye. Our reasoning for this is Amber and I think that Dylan potentially has some sort of bile stricture going on. A bile duct stricture is caused by narrowing of the bile duct. The narrow bile duct prevents the bile from draining into the intestine, which causes it to back up in the liver, which causes hepatitis and damage (scarring).
If this is what's going on, this could be the reason he's been on the path he's on. Although this was mentioned to Stanford, which they never even acknowledged that statement. Dr. Rich said he just wasn't sure what potentially is going on with Dylan but that he says something needs to be figured out quickly. Being on high doses of steroids like he is, for one is dangerous, makes him more susceptible to infections, and among other things causes bone issues, diabetes, and some really other nasty stuff.
So Dr. Rich agreed it would be a good idea to have this test done and feels we are either correct in our thinking and/or at min it could rule that scenario out. So he ordered it, we've already been contacted, and Monday at 6am Dylan will undergo the procedure. I know I've said this before but this man is a blessing to us, I feel as though he is one of our family members, as though he understands us, and that he deeply cares for Dylan as well as us as parents...yes he's Dylan's doctor but his sense of compassion is obvious and his meaningful concerns are what are felt, which is rare and it's appreciated.
This marks by far some of the hardest months of our lives. All we seek is answers but yet we are totally in the dark for the most part. Our days pass us by and the next thing we know its been another set of bad labs, more doctor visits, more medical bills, and then we blink and its been another month that we've just barely made it by. With each passing day/week/month we are one step closer to hearing those fearful words, that Dylan's liver is in a state that can't be reversed....this haunts me everyday, every night that I lay awake in bed, its on my mind constantly and not because I'm negative but because that is a reality if things don't change soon.
-Noah
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