Dylan with his baby sister (Tegan) and cousin Hayden
Dylan's labs are yet again elevated and now has to take a med (Actigall) he used to take back when he was pre-transplant. The purpose of this particular drug is to promote bile flow, they are adding this in just in case he is having bile obstruction issues. In addition they are talking about having to put him on Prednisone (steroid) indefinitely if they don't see a change in the next 2 weeks from the Actigall. Then if there is no change from those two, he will need another biopsy to re-check for rejection again.
Dylan for the most part has been in a constant state of Hepatitis (inflammation) over the better part of the last year, it goes without saying but this is not an ideal or good thing. Although the liver is a very hearty organ and it can regenerate, it must be given the right environment of no Hepatitis and ample time to do so. The constant state of being inflamed leads to scarring which is unrepairable.
The last time they did a ultrasound and biopsy his liver was showing signs of texture changes to the exterior of his liver...although subtle at the moment they are notated, whereas prior biopsy/scans did not see this (remember he has had 3 of these over the last year, so a decent change in a rather small time frame). We are fearful that we are headed down a very scary path yet again, even though no one thing(s) points to imminent danger the docs can't rule out that Dylan is having low grade rejection that is not typically how they see it in other patients (meaning potentially he presents differently, as everyone is effected in different ways). Making matters a bit harder Dylan just came off a 5 day burst of an aggressive dose of Prednisone, due to asthma. As well as 20 days of antibiotics for Strep and reoccurring throat infections. Even after this massive dosage his labs are still elevated and based on previous set of labs vs. new set...they are climbing. We fear if a burst dose won't fix or make better what he has going on, how will a low dose/daily dose do the trick, as its literally 1/4 of what the burst dose was. I will spare everyone my feelings on this drug Prednisone, its a whole other slew of unpleasant side effects that come with it.
Dylan has also been referred to the Ears/Nose/Throat doctor to have his tonsils removed this summer (due to his constant throat issues and because he has elevated EBV often, its best to do so as well). Once these are removed the docs will biopsy the tissue to check for EBV, which can harbor in those tissues and cause underlining problems. So here is yet another surgical procedure we will need to go through very soon.
When I got married, nobody ever told me how to be a husband and/or that it would be easy or conversely that it would be hard. I figured like the rest of my rather short life up to that point there would be plenty of ups and downs but the ups would offset the downs.
When we had a child, once again I wasn't told it would go one way or another (good or bad) nor was I handed a book on this is what you do. I figured no matter what, it would just work out for the better. Never once did I ever even rationalize the heartache that can be associated with this aspect of ones life. Never did I ever contemplate that I would have an unhealthy child whom would fight the fight of his life. After all that he has been through from literally 3 weeks old to now...it just never ends. Maybe I'm incorrect in thinking that after his liver transplant that things would get better "for the better" but this has yet to fully happen. For the last year we have been in a world of hopes and dreams...that his transplant, the "end all be all fix to make him better for the foreseeable future" would just do the trick and our worries would slowly diminish with time. As of yet, that has not happened, we live in a constant state of fear and for good reason.
-Noah
Dylan for the most part has been in a constant state of Hepatitis (inflammation) over the better part of the last year, it goes without saying but this is not an ideal or good thing. Although the liver is a very hearty organ and it can regenerate, it must be given the right environment of no Hepatitis and ample time to do so. The constant state of being inflamed leads to scarring which is unrepairable.
The last time they did a ultrasound and biopsy his liver was showing signs of texture changes to the exterior of his liver...although subtle at the moment they are notated, whereas prior biopsy/scans did not see this (remember he has had 3 of these over the last year, so a decent change in a rather small time frame). We are fearful that we are headed down a very scary path yet again, even though no one thing(s) points to imminent danger the docs can't rule out that Dylan is having low grade rejection that is not typically how they see it in other patients (meaning potentially he presents differently, as everyone is effected in different ways). Making matters a bit harder Dylan just came off a 5 day burst of an aggressive dose of Prednisone, due to asthma. As well as 20 days of antibiotics for Strep and reoccurring throat infections. Even after this massive dosage his labs are still elevated and based on previous set of labs vs. new set...they are climbing. We fear if a burst dose won't fix or make better what he has going on, how will a low dose/daily dose do the trick, as its literally 1/4 of what the burst dose was. I will spare everyone my feelings on this drug Prednisone, its a whole other slew of unpleasant side effects that come with it.
Dylan has also been referred to the Ears/Nose/Throat doctor to have his tonsils removed this summer (due to his constant throat issues and because he has elevated EBV often, its best to do so as well). Once these are removed the docs will biopsy the tissue to check for EBV, which can harbor in those tissues and cause underlining problems. So here is yet another surgical procedure we will need to go through very soon.
When I got married, nobody ever told me how to be a husband and/or that it would be easy or conversely that it would be hard. I figured like the rest of my rather short life up to that point there would be plenty of ups and downs but the ups would offset the downs.
When we had a child, once again I wasn't told it would go one way or another (good or bad) nor was I handed a book on this is what you do. I figured no matter what, it would just work out for the better. Never once did I ever even rationalize the heartache that can be associated with this aspect of ones life. Never did I ever contemplate that I would have an unhealthy child whom would fight the fight of his life. After all that he has been through from literally 3 weeks old to now...it just never ends. Maybe I'm incorrect in thinking that after his liver transplant that things would get better "for the better" but this has yet to fully happen. For the last year we have been in a world of hopes and dreams...that his transplant, the "end all be all fix to make him better for the foreseeable future" would just do the trick and our worries would slowly diminish with time. As of yet, that has not happened, we live in a constant state of fear and for good reason.
-Noah
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