Dylan's incision scar and bile drain (bag removed) On Monday Dylan had his scheduled labs done and later that day we had clinic. Dylan's lab were great, everything is trending down and thats exactly what we wish to see. Dylan got his Bile bag and some stitches removed from a drain hole in his side. The catheter tube going to his biliary tree is still in place and will remain in place up to a few more months (this just has a cap on it and stays taped to his body). Dylan felt so much better having this bag removed, he was very self conscience and felt everyone was starring at him and the bag. I'm happy it was removed for his sake, from a medical standpoint it was time b/c it wasn't catching anymore bile, so there was no need for it anymore. The whole scenario didn't go without waterworks from Dylan though; I feel so bad, he's been so traumatized that he thinks everyone in a white lab/dr coat is going to hurt him. He really lost it when they went to do these very simple procedures to him, literally screaming that he wanted everyone to "wait" and not do anymore stuff to him. He had himself so worked up that he was making himself sick.
We awoke at 4am to Dylan having explosive diarrhea, couldn't even make it to the toilet in time. He had more diarrhea throughout the day and we got really worried about it. We called the transplant team and their advice was to monitor it and let them know if anything changed or got worse. Dylan throughout mid morning seemed pretty good. We decided we could make the decently long trek to my work so I could catch up on things and just attempt to not come into a nightmare if I was to come back full time in a week (not saying Adam or anyone isn't doing there job but paperwork never ends at a busy automotive shop and its getting towards end of month and bills are coming due again). So we spent the day at LIC Motorsports, my work, and I was able to get a lot of stuff done. I was fairly frustrated with myself and a lot of other things throughout the day but it was what it was and I just did the best I could with what was in front of me. Adam has been doing a good job keeping things going and doing all aspects of our business (which I knew he could do and I never questioned that, just its a bit much for one person to do). At around 5:45pm thats when things changed.
Dylan had explosive diarrhea again and this time it was not normal looking, it was very pale and mucous looking...anyone who knows liver disease knows both of those combinations aren't good to see, especially 2 weeks post transplant. So we got on the phone with the GI fellow on-call, at the same time we started our long drive back towards our temporary home and Stanford Medical Hospital. The fellow didn't seem too concerned and said they would call back when they had a chance to review Dylan's chart in more detail. Amber and I have been our son's biggest advocate and if we haven't pushed so hard to do as such, I'm confident Dylan would of been in danger a long time ago...I credit Amber's motherly intuition for Dylan making it as far/long as he has, so we weren't questioning the fellow but we also knew we couldn't just go 14-16hrs and not "know" if things were ok or not. We arrived at the ER about 1.5hrs from the time we left and were promptly put into a room and Dylan was setup with an IV and labs were drawn. They ran a battery of tests, CBC, Complete Metabolic Panel (Liver function Tests), Stool Sample (to test for C-Diff, Influenza, Roto Virus), and Chemistry Test (Hydration Test). We were in the ER for a long time, we got results about 1am and were released shortly thereafter. None of the tests were of concern, which is good but at the same time we don't know what is causing Dylan's really bad diarrhea. None the less, knowing for sure that Dylan's liver is ok was paramount and I feel we did the right thing (so do the docs and transplant team). Dylan is such a trooper but I feel so bad for how he feels at times, he said "he was sorry that we had to go to the hospital again" and "if he was going to be in trouble"...UGH, this stuff is so unfair, how can he feel that way, and better yet...how can we make him feel better about it? We do everything we can to let him know that NONE of this is his fault but he takes it hard at times and of course so do we.
We called the Transplant Team today to advise them of our trip to the ER. They agreed we did the right thing and said they feel Dylan might have inflammation of his colon (Colitis), as he still has diarrhea and its now looking a little bloody. We have another appointment tomorrow for labs and clinic visit, so hoping to find out more and hoping that Dylan's liver labs continuing on there trend downwards.
I learned a few things over the course of the last few days. That the docs know what they're talking about when they say you MUST stay close to the hospital, there are so many reasons for this and clearly last night was one of them. I felt so guilty for bringing my family to the Northbay only to have to stress out and drive like a madman to get to the Southbay in rush hour traffic. I myself also felt very stressed while at work, I took easily 20 plus phone calls and just dove head first back into work, meanwhile I ended up doubled over in pain later on, which I attribute to the stress levels I was at yesterday. Its hard not to do things, I am a person who has worked my whole life and often times spending 6 days a week and 12 hours per day doing it. I'm not to proud to sit it out, I just don't want to let anyone down. I feel so grateful for what everyone has done for us and I don't want to wear out my welcome with my living accommodations, my friends whom are watching our dogs, and my brother who is left to fend for himself at our place of business. Just typing this is stressing me out...
I just want what is best for EVERYONE, I'm doing my best to wear every hat possible...and I feel like I'm doing a crummy job doing each and every one of them.
Tomorrow is a new day and an interesting one at that...we have requested to see Dylan's old liver and tomorrow is the day we get to view it (I feel this will be a good closure for us and what we've all battled for the last 5.5 years of our lives. Expect a update with pics tomorrow), I hope Dylan gets relief from his backside soon, and I hope his liver continues to be happy.
-Noah
We awoke at 4am to Dylan having explosive diarrhea, couldn't even make it to the toilet in time. He had more diarrhea throughout the day and we got really worried about it. We called the transplant team and their advice was to monitor it and let them know if anything changed or got worse. Dylan throughout mid morning seemed pretty good. We decided we could make the decently long trek to my work so I could catch up on things and just attempt to not come into a nightmare if I was to come back full time in a week (not saying Adam or anyone isn't doing there job but paperwork never ends at a busy automotive shop and its getting towards end of month and bills are coming due again). So we spent the day at LIC Motorsports, my work, and I was able to get a lot of stuff done. I was fairly frustrated with myself and a lot of other things throughout the day but it was what it was and I just did the best I could with what was in front of me. Adam has been doing a good job keeping things going and doing all aspects of our business (which I knew he could do and I never questioned that, just its a bit much for one person to do). At around 5:45pm thats when things changed.
Dylan had explosive diarrhea again and this time it was not normal looking, it was very pale and mucous looking...anyone who knows liver disease knows both of those combinations aren't good to see, especially 2 weeks post transplant. So we got on the phone with the GI fellow on-call, at the same time we started our long drive back towards our temporary home and Stanford Medical Hospital. The fellow didn't seem too concerned and said they would call back when they had a chance to review Dylan's chart in more detail. Amber and I have been our son's biggest advocate and if we haven't pushed so hard to do as such, I'm confident Dylan would of been in danger a long time ago...I credit Amber's motherly intuition for Dylan making it as far/long as he has, so we weren't questioning the fellow but we also knew we couldn't just go 14-16hrs and not "know" if things were ok or not. We arrived at the ER about 1.5hrs from the time we left and were promptly put into a room and Dylan was setup with an IV and labs were drawn. They ran a battery of tests, CBC, Complete Metabolic Panel (Liver function Tests), Stool Sample (to test for C-Diff, Influenza, Roto Virus), and Chemistry Test (Hydration Test). We were in the ER for a long time, we got results about 1am and were released shortly thereafter. None of the tests were of concern, which is good but at the same time we don't know what is causing Dylan's really bad diarrhea. None the less, knowing for sure that Dylan's liver is ok was paramount and I feel we did the right thing (so do the docs and transplant team). Dylan is such a trooper but I feel so bad for how he feels at times, he said "he was sorry that we had to go to the hospital again" and "if he was going to be in trouble"...UGH, this stuff is so unfair, how can he feel that way, and better yet...how can we make him feel better about it? We do everything we can to let him know that NONE of this is his fault but he takes it hard at times and of course so do we.
We called the Transplant Team today to advise them of our trip to the ER. They agreed we did the right thing and said they feel Dylan might have inflammation of his colon (Colitis), as he still has diarrhea and its now looking a little bloody. We have another appointment tomorrow for labs and clinic visit, so hoping to find out more and hoping that Dylan's liver labs continuing on there trend downwards.
I learned a few things over the course of the last few days. That the docs know what they're talking about when they say you MUST stay close to the hospital, there are so many reasons for this and clearly last night was one of them. I felt so guilty for bringing my family to the Northbay only to have to stress out and drive like a madman to get to the Southbay in rush hour traffic. I myself also felt very stressed while at work, I took easily 20 plus phone calls and just dove head first back into work, meanwhile I ended up doubled over in pain later on, which I attribute to the stress levels I was at yesterday. Its hard not to do things, I am a person who has worked my whole life and often times spending 6 days a week and 12 hours per day doing it. I'm not to proud to sit it out, I just don't want to let anyone down. I feel so grateful for what everyone has done for us and I don't want to wear out my welcome with my living accommodations, my friends whom are watching our dogs, and my brother who is left to fend for himself at our place of business. Just typing this is stressing me out...
I just want what is best for EVERYONE, I'm doing my best to wear every hat possible...and I feel like I'm doing a crummy job doing each and every one of them.
Tomorrow is a new day and an interesting one at that...we have requested to see Dylan's old liver and tomorrow is the day we get to view it (I feel this will be a good closure for us and what we've all battled for the last 5.5 years of our lives. Expect a update with pics tomorrow), I hope Dylan gets relief from his backside soon, and I hope his liver continues to be happy.
-Noah
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