We always say that we often don't update when we don't have much changes...it has been no exception over the last many months.
For over the past year now, he has been more or less the same as we have been discussing in the various other posts. Dylan is still battling the never ending roller coaster ride of elevated liver labs. He has been on/off steroids, variations of steroids, and multiple additional meds.
Due to Dylan's constant state of elevated labs and extremely immunosupressed state, his kidney's have taken a hit.
Yesterday saw Dylan back at Stanford to see Nephrology as well as the Liver Transplant team. All-in-all it was an uneventful day with more or less just ensuring he is holding his own while the kinks still get worked out. The general consensus was that Dylan needs his Prograf levels reduced, as well as his steroid intake reduced. As you can see in image above, Dylan's face is extremely round (from all the steroids). It has always been Amber and my thought that Dylan's body is super sensitive to the immunosuppression drug Prograf. In the past when he was in the 2-3 level range, his liver seemed much happier (it also wasn't in a chronic state of inflammation though), his current level is at 10-11...which is about as high as it was only a few days out from when he had transplant surgery. I do like the idea that they are now leaning towards trying to get all these levels down (which would make his system not as suppressed), seeing as being on the super suppressed side isn't working...the last year plus has proven that.
On another note, it was Dylan's B-day over the past weekend. Hard to believe he is 9 years old and going into 4th grade. We are super proud that he has been able to maintain and do fairly well in school through all this. For those that don't know, the meds he takes cause all sorts of issues (from being able to focus, irritability, and cramping of his hands). He has his moments and we have ours, its a fine balance like anyone else raising a kid(s), its just slightly different for him and its just another thing that he must try harder at, as for now he has to be on these medications for life.
It's hard for most to relate to any of which Dylan goes through. I can say for the first time in my life I have had and currently still dealing with a very small glimpse of his medication induced dealings. I injured my back (heinated disc at L5-S1, compression at the Sciatic Nerve, and narrowing of the spine). I have been on a high dose of Prednisone for the last 2+ weeks and just like I see in Dylan when he is on high doses of it, it's a very frustrating drug. It causes mood swings, uncontrollable hunger urges, and just an all around irritability from weird thoughts to flushness of skin. It's not fun but the worst part is the mental side of it. Being I'm an adult and can reflect on past of not being on this type of drug, it worries me how as a child he deals with this and not having the past "normalcy" to reflect back on. How does this affect him later on, how does this skew his thoughts for future, and how does he get past all he's ever known as his "normal"?
I would be lieing if I said this isn't a scary time for us, they are basically taking a kid with no immune system and going to let him be susceptible to the elements (in the past year it hasn't worked, it only has put him further into rejection). We are super hopeful that the next 2-4 weeks go polar opposites as they have in the last 13-14 ish months. Wish us luck!
-Noah
For over the past year now, he has been more or less the same as we have been discussing in the various other posts. Dylan is still battling the never ending roller coaster ride of elevated liver labs. He has been on/off steroids, variations of steroids, and multiple additional meds.
Due to Dylan's constant state of elevated labs and extremely immunosupressed state, his kidney's have taken a hit.
Yesterday saw Dylan back at Stanford to see Nephrology as well as the Liver Transplant team. All-in-all it was an uneventful day with more or less just ensuring he is holding his own while the kinks still get worked out. The general consensus was that Dylan needs his Prograf levels reduced, as well as his steroid intake reduced. As you can see in image above, Dylan's face is extremely round (from all the steroids). It has always been Amber and my thought that Dylan's body is super sensitive to the immunosuppression drug Prograf. In the past when he was in the 2-3 level range, his liver seemed much happier (it also wasn't in a chronic state of inflammation though), his current level is at 10-11...which is about as high as it was only a few days out from when he had transplant surgery. I do like the idea that they are now leaning towards trying to get all these levels down (which would make his system not as suppressed), seeing as being on the super suppressed side isn't working...the last year plus has proven that.
On another note, it was Dylan's B-day over the past weekend. Hard to believe he is 9 years old and going into 4th grade. We are super proud that he has been able to maintain and do fairly well in school through all this. For those that don't know, the meds he takes cause all sorts of issues (from being able to focus, irritability, and cramping of his hands). He has his moments and we have ours, its a fine balance like anyone else raising a kid(s), its just slightly different for him and its just another thing that he must try harder at, as for now he has to be on these medications for life.
It's hard for most to relate to any of which Dylan goes through. I can say for the first time in my life I have had and currently still dealing with a very small glimpse of his medication induced dealings. I injured my back (heinated disc at L5-S1, compression at the Sciatic Nerve, and narrowing of the spine). I have been on a high dose of Prednisone for the last 2+ weeks and just like I see in Dylan when he is on high doses of it, it's a very frustrating drug. It causes mood swings, uncontrollable hunger urges, and just an all around irritability from weird thoughts to flushness of skin. It's not fun but the worst part is the mental side of it. Being I'm an adult and can reflect on past of not being on this type of drug, it worries me how as a child he deals with this and not having the past "normalcy" to reflect back on. How does this affect him later on, how does this skew his thoughts for future, and how does he get past all he's ever known as his "normal"?
I would be lieing if I said this isn't a scary time for us, they are basically taking a kid with no immune system and going to let him be susceptible to the elements (in the past year it hasn't worked, it only has put him further into rejection). We are super hopeful that the next 2-4 weeks go polar opposites as they have in the last 13-14 ish months. Wish us luck!
-Noah
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