03.03.2014 Kaiser MRCP Appt. Today was a 4:30am wake up in order to get everyone ready and off to the Medical Imaging Dept at our local Kaiser. Dylan's Kaiser GI doc ordered a MRCP (which is a MRI specifically for the liver).
Dylan was super nervous but he handled it like the trooper that he is, no sleepy meds, no calming meds, just ole fashion tough guy stuff. The technician even said he was awesome and "better than a lot of his adult patients".
The results on the MRCP:
- No Dilation notated
- Renal Cyst notated
So the long and short of this is no strictures were seen during this test, which is what we were concerned about but that he does now have a Renal Cyst (Kidney). Dr. Rich is concerned and wants a liver biopsy done. He wants to eliminate the potential for Vanishing Bile Duct Syndrome (although very rare).
Symptoms:
- Hyperlipidemia
- Fat-Soluble Vitamin Deficiency
- Elevated: ALK Phos
- Elevated: GGT
- Elevated: Direct Bilirubin
Dylan has lots of these issues listed but it's too early to freak out about it and I'm holding on that it's "very rare" to have that issue but yet we can't ignore any of these potential issues.
Amber spoke briefly to our transplant coordinator over at LPCH (Stanford), she mentioned she is going to discuss with the team about doing a ERCP, which is: Endoscopic Retrograde Cholangiopancreatography and is a technique that combines the use of endoscopy and fluoroscopy to diagnose and treat certain problems of the biliary or pancreatic ductal systems. Through the endoscope, the physician can see the inside of the stomach and duodenum, and inject radiographic contrast into the ducts in the biliary tree and pancreas so they can be seen on X-rays.
The quick thought is perhaps the connection that connects Dylan's liver to his intestine (which is also known as Roux-en-Y) is hardened and has a stricture (the MRCP wouldn't necessarily see this and by doing the ERCP they could visualize these area's and see if they see something the MRCP imaging does not). She also mentioned about doing the liver biopsy at the same time. For those that don't understand what Roux-en-Y is. Think of having your exterior bile duct(s) hooked right to your small intestine...still doesn't make sense? Here is an image (as you can see, he has altered anatomy b/c he didn't get a deceased liver which often times will come with a complete biliary tree and gallbladder which then hooks up to the intestine like everyone else, although not always...just depends on lots of other things from that liver donor and the need to section it, etc...I won't bore you with the details of that stuff.)
Dylan was super nervous but he handled it like the trooper that he is, no sleepy meds, no calming meds, just ole fashion tough guy stuff. The technician even said he was awesome and "better than a lot of his adult patients".
The results on the MRCP:
- No Dilation notated
- Renal Cyst notated
So the long and short of this is no strictures were seen during this test, which is what we were concerned about but that he does now have a Renal Cyst (Kidney). Dr. Rich is concerned and wants a liver biopsy done. He wants to eliminate the potential for Vanishing Bile Duct Syndrome (although very rare).
Symptoms:
- Hyperlipidemia
- Fat-Soluble Vitamin Deficiency
- Elevated: ALK Phos
- Elevated: GGT
- Elevated: Direct Bilirubin
Dylan has lots of these issues listed but it's too early to freak out about it and I'm holding on that it's "very rare" to have that issue but yet we can't ignore any of these potential issues.
Amber spoke briefly to our transplant coordinator over at LPCH (Stanford), she mentioned she is going to discuss with the team about doing a ERCP, which is: Endoscopic Retrograde Cholangiopancreatography and is a technique that combines the use of endoscopy and fluoroscopy to diagnose and treat certain problems of the biliary or pancreatic ductal systems. Through the endoscope, the physician can see the inside of the stomach and duodenum, and inject radiographic contrast into the ducts in the biliary tree and pancreas so they can be seen on X-rays.
The quick thought is perhaps the connection that connects Dylan's liver to his intestine (which is also known as Roux-en-Y) is hardened and has a stricture (the MRCP wouldn't necessarily see this and by doing the ERCP they could visualize these area's and see if they see something the MRCP imaging does not). She also mentioned about doing the liver biopsy at the same time. For those that don't understand what Roux-en-Y is. Think of having your exterior bile duct(s) hooked right to your small intestine...still doesn't make sense? Here is an image (as you can see, he has altered anatomy b/c he didn't get a deceased liver which often times will come with a complete biliary tree and gallbladder which then hooks up to the intestine like everyone else, although not always...just depends on lots of other things from that liver donor and the need to section it, etc...I won't bore you with the details of that stuff.)
For now we wait to hear the final word from LPCH and see what they want to do, although we know its going to be some semi-invasive procedure unfortunately.
I'm not going to lie, I have had my heart pounding in fear for the last week in anticipation of this test. I'm happy the results are such that aren't super negative but leave more pondering than answers (as well as the added Kidney Cyst, which I haven't even had time to process in regards to what that all means...hoping its medication related and that's that but perhaps that's wishful thinking on my end).
As much as I love how strong Dylan is through all this, it also hurts to know the stuff he's forced to be strong about. We often times only reflect back as adults and lose sight that he's only 8 years old, he's been doing this his entire life and as a sense of reflection on a very young life...that's a very crummy thought that I can never shake.
-Noah
I'm not going to lie, I have had my heart pounding in fear for the last week in anticipation of this test. I'm happy the results are such that aren't super negative but leave more pondering than answers (as well as the added Kidney Cyst, which I haven't even had time to process in regards to what that all means...hoping its medication related and that's that but perhaps that's wishful thinking on my end).
As much as I love how strong Dylan is through all this, it also hurts to know the stuff he's forced to be strong about. We often times only reflect back as adults and lose sight that he's only 8 years old, he's been doing this his entire life and as a sense of reflection on a very young life...that's a very crummy thought that I can never shake.
-Noah
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