This hangs in Dylan's room Its been 4 weeks, which means in that time frame we've had 2 sets of labs drawn. As mentioned before, we never update based on 1 set of labs...we know better, we know that this life is about looking at trends and to do so means not getting excited when you see a decent/good set of labs. Today this holds true again and today is an especially darker day for our family.
Last post we advised that the docs were going to try something new, that they were going to lower his anti-rejection med and his steroid level. More or less that is what was done (basically cutting the levels in his body in half. He went from a Prograf level of 11-12 to 5-6, his Rapamune level now being at 5, and Budesonide from 6mg to 3mg).
2 weeks ago, Dylan's labs were basically all in "normal range" and for the first time in a long time we felt we might be on to something. We kept true to our form though and said, "let's see what the next set of labs are". Those labs came back about midnight this morning and as Amber read them out loud, it was apparent lots was about to change. Dylan's labs are the worst they've been in over a year, it might even be longer but at 12-1am, that was as far as Amber could look back in the history.
For those interested, here were some of his labs:
Not to get to far off topic but I feel guilty that just yesterday I was complaining on my Facebook page about how our family has never had a "real vacation" and here's a little excerpt on what I had mentioned.
"I feel crummy as a father/dad/parent that I have never supplied those memories to my kids as of yet, let alone any to be perfectly honest. Not to makes excuses (ok maybe a little) its been a rough 9 ish years, still is, but as I look back on it all...its semi negative in the sense that it's been nothing but medical/hospital stays, financial struggles, and well lots of stress".
I can say that as I typed that, I thought to myself, how selfish it is of me for thinking that its something that we deserve and/or is owed to our family. Today I feel that burden of my statements, today I feel that guilt of my complaining, today I would give anything for just better labs that appeared on our cell phone.
So far over the last 1 1/4 years now, they have tried pretty much everything to get Dylan's liver back to being happy and it has all been met with more suppression and more drugs because it just won't normalize. I know this latest set of labs will bring a hospital stay for us, this will warrant another liver biopsy for sure but more importantly, where do we go from here? It appears they have exhausted most of the least invasive routes. I know enough to know that this can't continue this way, this is what leads to organ failure (in time) and being on the path for another transplant. The thought of our next step/steps is hard to think about to be honest.
Last post we advised that the docs were going to try something new, that they were going to lower his anti-rejection med and his steroid level. More or less that is what was done (basically cutting the levels in his body in half. He went from a Prograf level of 11-12 to 5-6, his Rapamune level now being at 5, and Budesonide from 6mg to 3mg).
2 weeks ago, Dylan's labs were basically all in "normal range" and for the first time in a long time we felt we might be on to something. We kept true to our form though and said, "let's see what the next set of labs are". Those labs came back about midnight this morning and as Amber read them out loud, it was apparent lots was about to change. Dylan's labs are the worst they've been in over a year, it might even be longer but at 12-1am, that was as far as Amber could look back in the history.
For those interested, here were some of his labs:
- 334 ALT
- 408 AST
- 224 ALK
- 168 GGT
Not to get to far off topic but I feel guilty that just yesterday I was complaining on my Facebook page about how our family has never had a "real vacation" and here's a little excerpt on what I had mentioned.
"I feel crummy as a father/dad/parent that I have never supplied those memories to my kids as of yet, let alone any to be perfectly honest. Not to makes excuses (ok maybe a little) its been a rough 9 ish years, still is, but as I look back on it all...its semi negative in the sense that it's been nothing but medical/hospital stays, financial struggles, and well lots of stress".
I can say that as I typed that, I thought to myself, how selfish it is of me for thinking that its something that we deserve and/or is owed to our family. Today I feel that burden of my statements, today I feel that guilt of my complaining, today I would give anything for just better labs that appeared on our cell phone.
So far over the last 1 1/4 years now, they have tried pretty much everything to get Dylan's liver back to being happy and it has all been met with more suppression and more drugs because it just won't normalize. I know this latest set of labs will bring a hospital stay for us, this will warrant another liver biopsy for sure but more importantly, where do we go from here? It appears they have exhausted most of the least invasive routes. I know enough to know that this can't continue this way, this is what leads to organ failure (in time) and being on the path for another transplant. The thought of our next step/steps is hard to think about to be honest.
What do we tell this guy when he wakes up today? How is he suppose to understand? What keeps him from giving up? As his parent and more importantly his mom/dad we are suppose to hold it all together, what does one do when that option feels like its crumbling apart...
-Noah
-Noah
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