Today was a packed schedule, we had Lab draw at 7:30am, Pathology (viewing of Dylan's old liver) at 1:30pm, and liver clinic at 2pm.
We slept pretty bad, literally only a few hrs again. Dylan has been getting up non stop to go to the bathroom and to say the least we are extremely beat down and exhausted at this point.
We made it to the lab right on time but it wasn't without hiccups. Amber had put Dylan's numbing cream on both the inner elbow creases and on his left hand but all his veins are still blown out and just destroyed at this point. The only spot they could use was the top of Dylan's right hand. Needless to say he was disappointed with this b/c he knew it was going to hurt a bit but he made it through it. We made our way back to the house b/c Dylan's going to the toilet every 20-30 mins non-stop.
We headed back to the hospital and were excited to go to Pathology to view Dylan's old liver. I know some think, why would we wish to do this and my only answer is...I feel in order for us to move forward with our lives we need to come to terms with the past and truly understand (in a physical sense) what was going on inside of Dylan's body. We had arrived and it was really interesting to say the least once we got a chance to view it. The liver at first sight was VERY large, I was expecting something so much smaller. The appearance of it was very grey (not all pics represent this but it was very grey colored), very hard, and nodular. The texture was not smooth like livers are suppose to be and was more of a stucco feeling, very much like a meatloaf (which is not how it should be, livers should be smooth and elongated). Upon looking at it closely you could visually see the bad sections of his liver. If you notice the sections that show the liver split in half you can see the inner 20% or so is pinkish colored and the outer is very grey/brown looking (which is scar tissue aka cirrhosis). We spoke to the Pathologist and asked if he had noticed anything out of the "norm", aside from the obvious, and he mentioned that the vascular structure under microscope was not developed completely, which makes sense as to why Dylan had such high pressure in his system (causing the varicies and bleed) and as the liver got sicker (more cirrhotic) that these issues became more prevalent. It was very interesting to say the least and I feel it was a good thing for us to view and bring some sort of closure to the past 5.5 years of our lives.
Dylan's clinic visit was very typical for the most part. We got Dylan's labs back and everything is still trending downwards, with exception of Dylan's Bilirubin has jumped up 3x what it was 2 days ago. The docs are not overly concerned at this moment but do wish to watch Dylan even more closely now. Their is a few reasons this could be happening, 1- removal of the bile bag, 2- swelling inside his bile duct, 3- infection. As of this moment they are going to up his Prograf (anti-rejection) medicine and watch for Dylan's labs on Monday and see what happens, we know his liver is doing well but the bilirubin is of concern and needs to trend downwards, otherwise they will intervene on Monday next week.
-Noah
***WARNING- IMAGES ARE OF GRAPHIC NATURE***
Slideshow:
***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge. To get more images put your cursor over the last picture shown on the right, it will scroll to more images***
We slept pretty bad, literally only a few hrs again. Dylan has been getting up non stop to go to the bathroom and to say the least we are extremely beat down and exhausted at this point.
We made it to the lab right on time but it wasn't without hiccups. Amber had put Dylan's numbing cream on both the inner elbow creases and on his left hand but all his veins are still blown out and just destroyed at this point. The only spot they could use was the top of Dylan's right hand. Needless to say he was disappointed with this b/c he knew it was going to hurt a bit but he made it through it. We made our way back to the house b/c Dylan's going to the toilet every 20-30 mins non-stop.
We headed back to the hospital and were excited to go to Pathology to view Dylan's old liver. I know some think, why would we wish to do this and my only answer is...I feel in order for us to move forward with our lives we need to come to terms with the past and truly understand (in a physical sense) what was going on inside of Dylan's body. We had arrived and it was really interesting to say the least once we got a chance to view it. The liver at first sight was VERY large, I was expecting something so much smaller. The appearance of it was very grey (not all pics represent this but it was very grey colored), very hard, and nodular. The texture was not smooth like livers are suppose to be and was more of a stucco feeling, very much like a meatloaf (which is not how it should be, livers should be smooth and elongated). Upon looking at it closely you could visually see the bad sections of his liver. If you notice the sections that show the liver split in half you can see the inner 20% or so is pinkish colored and the outer is very grey/brown looking (which is scar tissue aka cirrhosis). We spoke to the Pathologist and asked if he had noticed anything out of the "norm", aside from the obvious, and he mentioned that the vascular structure under microscope was not developed completely, which makes sense as to why Dylan had such high pressure in his system (causing the varicies and bleed) and as the liver got sicker (more cirrhotic) that these issues became more prevalent. It was very interesting to say the least and I feel it was a good thing for us to view and bring some sort of closure to the past 5.5 years of our lives.
Dylan's clinic visit was very typical for the most part. We got Dylan's labs back and everything is still trending downwards, with exception of Dylan's Bilirubin has jumped up 3x what it was 2 days ago. The docs are not overly concerned at this moment but do wish to watch Dylan even more closely now. Their is a few reasons this could be happening, 1- removal of the bile bag, 2- swelling inside his bile duct, 3- infection. As of this moment they are going to up his Prograf (anti-rejection) medicine and watch for Dylan's labs on Monday and see what happens, we know his liver is doing well but the bilirubin is of concern and needs to trend downwards, otherwise they will intervene on Monday next week.
-Noah
***WARNING- IMAGES ARE OF GRAPHIC NATURE***
Slideshow:
***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge. To get more images put your cursor over the last picture shown on the right, it will scroll to more images***
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