We apologize for the lack of updates, these are really stressful times and honestly finding a computer, let alone the time to gather thoughts is a challenging thing at this moment. Over the last 48hrs a lot has transpired.
I got discharged from the hospital on Saturday morning and was some what relieved to get back to a normal house setting and maybe recoup better there, no offense against the hospital but lets be real...its not a hotel (the constant in/out of nurses, meds, vital checks, and just not being in your own bed is never easy). The core of the issue is, I can't relax without my family. I did attempt to take it a bit easy the rest of the day on Saturday and then come back to see Amber and Dylan on Sunday. I found myself not being able to really eat, relax, or manage my overall pain all that well. Even with the great support from other family, its just not the same...and I missed my family terribly.
On Sunday (Yesterday), I headed to the hospital early to spend the day with Amber and D-man, it has been darn near a week since I had seen them for more than 5 mins, which in short was beyond unbearable to say the least. We planned for what was to come, had executed it well but it became way more than I honestly thought it would be. I never went into this with any preconceived notions that it would go one way or the other, I just knew we would do what we could to get through this time and make sure Dylan could have the best outcome.
I arrived here early yesterday (around 10am), hung out and was enjoying us being a family again, it was really nice to be together. Within the hour of being here, we got Dylan's lab results; the results showed that his AST, ALT, and a few select other liver functions had raised (as opposed to dropping, which is what is suppose to happen). This alarmed the transplant staff, whom was very honest about everything and kept us informed of there concerns. There could be many reasons as to why this was happening and they wanted to rule out a major one, which was that the Hepatic Artery was still flowing (during the first 7 days they worry about this artery clotting off and losing blood supply), so they called in the ultrasound tech to locate the artery. The tech spent in upwards of 45 mins trying to find his arteries, I say arteries b/c when they transplanted my liver into Dylan, my liver had 2 of them (which apparently is EXTREMELY rare), Dylan's surgeon even mentioned this and said that he was possibly going to not hook it up but said there would be no harm in doing so (extra blood supply couldn't hurt that's for sure). After all this time of looking and no success, the situation was getting very scary, we could see it on the tech's face (whom had been able to find it every other time he looked for it) and the transplant teams worries became more of an immediate plan of action. We were told that Dylan would need to have a CT Scan to locate these arteries and see if they're still working, they would inject dye into his central line and take a scan to see if it has flow. If it didnt have flow Dylan would be re-listed as status 1A = #1 on the national transplant waiting list and would be next inline for an immediate transplant.....again. This was a thought that no words can explain and I have none to explain it now.
We were whisked off to CT, both Amber and I would be in the room holding Dylan's hands to keep him still and feeling safe. We had a direct line view to the observation booth where they perform/review the scans. We feel so blessed that my transplant surgeon was the on call liver doc for the week, as well as one of Dylan's other surgeons that was in his surgery, so familiar faces were present. I couldn't help but look at these folks and there expressions to gauge what was going on while they were reading the images. I could visibly see that things weren't looking good. As you can imagine we held hope for the best, we were prepped for the worst, and the entire situation was so surreal, so unbelievable, and so scary to think that our son could go into immediate liver failure and face this whole process all over again. I had such feelings of hopelessness, emptiness, and that the one gift I could give (myself/liver) and even that wasn't good enough. The surgeons came out and said that the left artery (the extra one my liver had) had clotted and died off and the right one was inconclusive on the scan from there view; that they needed to call the head radiologist and get him to review higher resolution images and that they would let us know within the hour.
We made our way back to the room and sat, we cried, we went insane, we were lost. We all at this point I feel lost most of our hope for the "best" outcome, as it seemed evident that a major turning point was about to happen. As we waited, we consoled one another, we grieved in our own ways, and some of us made mends with loved ones...this was a really hard time; it was like minutes were hours.
We received a call from Dr. Kim (she is amazing by the way), she said that the radiologist was confident that there was still flow in the right artery; that we are not out of the woods just yet, we need to be cautious but was optimistic and they're going to watch Dylan very closely. We were told that morning labs would be a good indicator if things are going bad, stabilizing, or getting better. So we took a breather and decided it was good news that we just heard, and we would hold our thoughts until today.
We got Dylan's labs today and as much as we prayed and hoped for them to be better, they were not. They had gotten a tad worse on some, a decent amount on others, and some unchanged, as well as a few better but the one's we needed better didn't get better. We became very concerned but decided not to freak out until we saw Dylan's transplant surgeon, Dr. Esquivel. Around 2:30pm today Dr. Esquivel came in and gave us a very concise run down of what was going on. He told us that he is concerned for Dylan's situation but is optimistic. Also that he is not willing to treat it with more drugs, the side effect(s) could make things worse. He feels Dylan should be given the chance to do well on his own and allow his body to do what it needs to do and that tomorrow labs if they come down will be a good indication that things are back on track and in the right direction, if they rise again that he will have another conversation with us and start discussing rejection a bit more (as the 2nd week is the week you worry most about rejection). Dylan's Prograf levels are on the higher range of the scale. He is going to taper him back even more than the typical threshold for patients and hope that it makes an effect on this and his labs.
I must say, when this man speaks, I don't even know how to explain how it makes us feel, he has such an amazing way about himself. Aside from the fact this man has saved my son's life and countless others; when in his presence you feel a sense of relief and that whatever he says one knows its the truth that is backed up by intelligence, integrity, experience, and mostly compassion. This man is one that I will never be able to put into words properly of how I feel around him. Honestly he may be God, as odd as that sounds, this man has the touch of an angel and one that only God could have purposely put on this earth. He is a remarkable man.
Tomorrow is another big day for us, please continue to keep our son and family in your prayers, I know the tremendous amount of support and words being sent above are helping us through this most difficult time of our lives.
-Noah
I got discharged from the hospital on Saturday morning and was some what relieved to get back to a normal house setting and maybe recoup better there, no offense against the hospital but lets be real...its not a hotel (the constant in/out of nurses, meds, vital checks, and just not being in your own bed is never easy). The core of the issue is, I can't relax without my family. I did attempt to take it a bit easy the rest of the day on Saturday and then come back to see Amber and Dylan on Sunday. I found myself not being able to really eat, relax, or manage my overall pain all that well. Even with the great support from other family, its just not the same...and I missed my family terribly.
On Sunday (Yesterday), I headed to the hospital early to spend the day with Amber and D-man, it has been darn near a week since I had seen them for more than 5 mins, which in short was beyond unbearable to say the least. We planned for what was to come, had executed it well but it became way more than I honestly thought it would be. I never went into this with any preconceived notions that it would go one way or the other, I just knew we would do what we could to get through this time and make sure Dylan could have the best outcome.
I arrived here early yesterday (around 10am), hung out and was enjoying us being a family again, it was really nice to be together. Within the hour of being here, we got Dylan's lab results; the results showed that his AST, ALT, and a few select other liver functions had raised (as opposed to dropping, which is what is suppose to happen). This alarmed the transplant staff, whom was very honest about everything and kept us informed of there concerns. There could be many reasons as to why this was happening and they wanted to rule out a major one, which was that the Hepatic Artery was still flowing (during the first 7 days they worry about this artery clotting off and losing blood supply), so they called in the ultrasound tech to locate the artery. The tech spent in upwards of 45 mins trying to find his arteries, I say arteries b/c when they transplanted my liver into Dylan, my liver had 2 of them (which apparently is EXTREMELY rare), Dylan's surgeon even mentioned this and said that he was possibly going to not hook it up but said there would be no harm in doing so (extra blood supply couldn't hurt that's for sure). After all this time of looking and no success, the situation was getting very scary, we could see it on the tech's face (whom had been able to find it every other time he looked for it) and the transplant teams worries became more of an immediate plan of action. We were told that Dylan would need to have a CT Scan to locate these arteries and see if they're still working, they would inject dye into his central line and take a scan to see if it has flow. If it didnt have flow Dylan would be re-listed as status 1A = #1 on the national transplant waiting list and would be next inline for an immediate transplant.....again. This was a thought that no words can explain and I have none to explain it now.
We were whisked off to CT, both Amber and I would be in the room holding Dylan's hands to keep him still and feeling safe. We had a direct line view to the observation booth where they perform/review the scans. We feel so blessed that my transplant surgeon was the on call liver doc for the week, as well as one of Dylan's other surgeons that was in his surgery, so familiar faces were present. I couldn't help but look at these folks and there expressions to gauge what was going on while they were reading the images. I could visibly see that things weren't looking good. As you can imagine we held hope for the best, we were prepped for the worst, and the entire situation was so surreal, so unbelievable, and so scary to think that our son could go into immediate liver failure and face this whole process all over again. I had such feelings of hopelessness, emptiness, and that the one gift I could give (myself/liver) and even that wasn't good enough. The surgeons came out and said that the left artery (the extra one my liver had) had clotted and died off and the right one was inconclusive on the scan from there view; that they needed to call the head radiologist and get him to review higher resolution images and that they would let us know within the hour.
We made our way back to the room and sat, we cried, we went insane, we were lost. We all at this point I feel lost most of our hope for the "best" outcome, as it seemed evident that a major turning point was about to happen. As we waited, we consoled one another, we grieved in our own ways, and some of us made mends with loved ones...this was a really hard time; it was like minutes were hours.
We received a call from Dr. Kim (she is amazing by the way), she said that the radiologist was confident that there was still flow in the right artery; that we are not out of the woods just yet, we need to be cautious but was optimistic and they're going to watch Dylan very closely. We were told that morning labs would be a good indicator if things are going bad, stabilizing, or getting better. So we took a breather and decided it was good news that we just heard, and we would hold our thoughts until today.
We got Dylan's labs today and as much as we prayed and hoped for them to be better, they were not. They had gotten a tad worse on some, a decent amount on others, and some unchanged, as well as a few better but the one's we needed better didn't get better. We became very concerned but decided not to freak out until we saw Dylan's transplant surgeon, Dr. Esquivel. Around 2:30pm today Dr. Esquivel came in and gave us a very concise run down of what was going on. He told us that he is concerned for Dylan's situation but is optimistic. Also that he is not willing to treat it with more drugs, the side effect(s) could make things worse. He feels Dylan should be given the chance to do well on his own and allow his body to do what it needs to do and that tomorrow labs if they come down will be a good indication that things are back on track and in the right direction, if they rise again that he will have another conversation with us and start discussing rejection a bit more (as the 2nd week is the week you worry most about rejection). Dylan's Prograf levels are on the higher range of the scale. He is going to taper him back even more than the typical threshold for patients and hope that it makes an effect on this and his labs.
I must say, when this man speaks, I don't even know how to explain how it makes us feel, he has such an amazing way about himself. Aside from the fact this man has saved my son's life and countless others; when in his presence you feel a sense of relief and that whatever he says one knows its the truth that is backed up by intelligence, integrity, experience, and mostly compassion. This man is one that I will never be able to put into words properly of how I feel around him. Honestly he may be God, as odd as that sounds, this man has the touch of an angel and one that only God could have purposely put on this earth. He is a remarkable man.
Tomorrow is another big day for us, please continue to keep our son and family in your prayers, I know the tremendous amount of support and words being sent above are helping us through this most difficult time of our lives.
-Noah
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