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I honestly don't even know where to begin. I can't even say sorry for the delay in not posting because it was intentional that we held off this go around. I know we have said in the past that we hold off as we want to ensure we have a couple sets of good labs before we get excited, this time was no different, but in some manner it was/is very different as a lot has transpired over the course of life since the last post. With that being said, I will keep this post semi short.
As of last post, the transplant team was going to be moving forward with doing a Biopsy but randomly the night before we were scheduled to head to Stanford for a few days his labs came back remarkably better (completely off the wall and random). We have always agreed/mentioned that being on steroids has always netted questionable findings when it comes to the Biopsy. So they cancelled it and instead had us stop all of Dylan's steroids so we could get a true baseline. The main reasons being is nothing was getting better, it was a rocky road regardless, so the thought was to stop the steroids and see what happens.
We waited to do labs, they came back good. We waited at interval for another set of labs, they came back even better! At this point I was ready to do a journal update, as that was 3 sets of labs and they were the best they had ever been in over 2+ years. We for sure embraced each other as a family and felt like we might be on to something, perhaps we turned a new page in this post transplant life we are on.
School year started and low and behold just a few weeks in Dylan gets the common cold like everyone else. Of course that's not how it ends, this cold turns into a miserable 1 month of fighting double lung pneumonia and no less than 6-8 specialty and doctor visits, which included all sorts of medications again. We at this point can't do labs, of course they would be messed up, the course is to hold off until he is better (by at min 1 week before doing labs).
We are a few days shy of getting labs done and Dylan has an anaphylaxis incident. For those that don't know, Dylan is highly allergic to many foods (common for immunosuppressed kids). Amber had decided to get Dylan a treat, she read the bold allergen information (may contain traces of ...which is fine for Dylan, he can have traces or shared on same equipment, etc.) and it looked good at quick glance but it turned out that in the finer print it had cashews in it. Within minutes of him eating it, his lips puffed up, eyes swelled and at this point we were already cramming down 25mg of Benadryl and on the phone with his GI doc to see how much Prednisone to give, which was 40mg. Amber was one step away from using the EpiPen but we didn't feel it necessary b/c his airway was still good. At this point his symptoms were getting worse, so it was off to the ER. Once in the ER they advised we did everything they would of done and felt we did the right things, so they sent us home and advised to diligently watch him over the next 24-48 hrs (as symptoms can come back).
That was 1.5 weeks ago, so yesterday was time for Dylan's labs. Unfortunately, as so often this life goes, his labs are all elevated and not just a little, by a lot. So we have come full circle again, from the lowest of lows to the highest of highs. We constantly wonder if he has other stuff going on, that is either medication related or medication induced. I just don't know how much more we/he can take of this. Perhaps we have caught the labs as they are trending down, perhaps labs next week will make a turn for the better, perhaps this is how it's going to forever go...the latter can only go on so long and thus far we are coming up on 2 years of roller coaster labs (which is persistent inflammation of his liver).
I know I haven't hit all the details as I typically do but to say the least, my brain just isn't working properly anymore, we are having a hard time with all this, Dylan is having an extremely hard time with everything as of lately, and I guess wanting normalcy to some degree just isn't in the cards yet.
-Noah
As of last post, the transplant team was going to be moving forward with doing a Biopsy but randomly the night before we were scheduled to head to Stanford for a few days his labs came back remarkably better (completely off the wall and random). We have always agreed/mentioned that being on steroids has always netted questionable findings when it comes to the Biopsy. So they cancelled it and instead had us stop all of Dylan's steroids so we could get a true baseline. The main reasons being is nothing was getting better, it was a rocky road regardless, so the thought was to stop the steroids and see what happens.
We waited to do labs, they came back good. We waited at interval for another set of labs, they came back even better! At this point I was ready to do a journal update, as that was 3 sets of labs and they were the best they had ever been in over 2+ years. We for sure embraced each other as a family and felt like we might be on to something, perhaps we turned a new page in this post transplant life we are on.
School year started and low and behold just a few weeks in Dylan gets the common cold like everyone else. Of course that's not how it ends, this cold turns into a miserable 1 month of fighting double lung pneumonia and no less than 6-8 specialty and doctor visits, which included all sorts of medications again. We at this point can't do labs, of course they would be messed up, the course is to hold off until he is better (by at min 1 week before doing labs).
We are a few days shy of getting labs done and Dylan has an anaphylaxis incident. For those that don't know, Dylan is highly allergic to many foods (common for immunosuppressed kids). Amber had decided to get Dylan a treat, she read the bold allergen information (may contain traces of ...which is fine for Dylan, he can have traces or shared on same equipment, etc.) and it looked good at quick glance but it turned out that in the finer print it had cashews in it. Within minutes of him eating it, his lips puffed up, eyes swelled and at this point we were already cramming down 25mg of Benadryl and on the phone with his GI doc to see how much Prednisone to give, which was 40mg. Amber was one step away from using the EpiPen but we didn't feel it necessary b/c his airway was still good. At this point his symptoms were getting worse, so it was off to the ER. Once in the ER they advised we did everything they would of done and felt we did the right things, so they sent us home and advised to diligently watch him over the next 24-48 hrs (as symptoms can come back).
That was 1.5 weeks ago, so yesterday was time for Dylan's labs. Unfortunately, as so often this life goes, his labs are all elevated and not just a little, by a lot. So we have come full circle again, from the lowest of lows to the highest of highs. We constantly wonder if he has other stuff going on, that is either medication related or medication induced. I just don't know how much more we/he can take of this. Perhaps we have caught the labs as they are trending down, perhaps labs next week will make a turn for the better, perhaps this is how it's going to forever go...the latter can only go on so long and thus far we are coming up on 2 years of roller coaster labs (which is persistent inflammation of his liver).
I know I haven't hit all the details as I typically do but to say the least, my brain just isn't working properly anymore, we are having a hard time with all this, Dylan is having an extremely hard time with everything as of lately, and I guess wanting normalcy to some degree just isn't in the cards yet.
-Noah
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