Dylan & Tegan (Acre Coffee, CA) Sometimes it feels like it never ends on our end. After 3+ months of fighting liver rejection, last week we finally got a break for Dylan with a set of "normal labs". Than last night we just got a call from the critical lab at Kaiser saying Dylan needs to be rushed to the ER due to extremely low magnesium (which was at 1.4, for most people anything under 1.5 is a major issue, as it can cause serious heart issues)....needless to say that was the least of me and Amber's worries. Dylan's full swing in liver rejection again but even more so now.
So to say the least its pretty frustrating that this lady on the other end of the line was telling me that I have to rush Dylan to the ER, I on the other hand was advising her to read his chart and look back a few lab draws and see his trend. She then advised me that she had a prompt on her screen that said if the parents reject to recontact the ER doc again for advice. I advised her that Dylan is a pediatric liver transplant recipient, he's on medications that inadvertently lower his magnesium. His magnesium being at 1.4 doesn't concern me but the LFT's (Liver Function Tests) on the other hand are extremely alarming. I told her to take a look back as early as the last set of labs (approx 10 days prior)...she than said, "Oh, yeah, I see what you're saying now".
Now don't get me wrong, I know these folks in the call center are doing their job and doing the best they can. What I don't understand is who doesn't look back in a chart at the last few lab draws to see a trend for him. What they did is lump him together with the rest of other "normal population", as opposed to treating Dylan as Dylan. That's the stuff that irritates me, as what if we weren't as active advocates for our son, what if we weren't his voice in a time of need, what if we just didn't know any better and just did as we were told. I can say he at minimum would of been poked yet again, we would of been admitted as inpatient, and we would of been supplied the burden of that bill. If he needs it, great, we'll do it but something like this wasn't even thought about on their end. In all the years we have been dealing with Dylan's liver disease (his whole life), never once has a department called "critical care lab" called us...ever! That was pretty alarming to be getting a call like that and at the end of the day, Amber and I soak up the burden of that stress. After talking to Kaiser we of course called our transplant team at Stanford.
Stanford was of course concerned when we read the lab values and needed to consult with the on-call doc, which luckily was Dylan's doc. For those that follow this blog and unfortunately have little ones whom deal with similar issues, these next set of numbers will make sense. But even those who don't can see the shift that has taken place in only 10 days. At last lab results they lowered his Prednisone (we have been tapering for the better part of 2 months now and we were finally only on 2.5mg) but clearly after this set of labs, his liver is very unhappy and back in rejection.
Here's just a few LFT's:
Stanford advised us to increase Dylan's anti-rejection medication (Prograf) to 2mg (which is up from 1.5mg, it doesn't seem like much but that's a huge jump on this medication) and to increase his Prednisone to 10mg (which is up from 2.5mg, 4x the amount of what he was taking before). I know I have talked before about the necessary evil both these drugs are but its really heart wrenching to see him increasing in Prednisone again...this stuff is evil (at this time necessary evil) and just horrific stuff. It makes you gain a bunch of weight (water retention), causes you to constantly be hungry and get no fulfillment from what you do eat, and makes you beyond irritable to name a few. I hate seeing Dylan on this steroid, he just isn't himself, and is often very unhappy/depressed while on it in high doses over extended periods of time (which has been over 3 months now).
In addition Stanford has requested labs again tomorrow (07.25.2013), they said if his labs don't meet criteria, they will be admitting him for liver biopsy and IV steroids. They didn't give us a threshold but I imagine it needs to be dramatically different for us to avoid this scenario. Whatever needs to happen is what we'll do but I would be lieing if I didn't say this stresses us out to no end. I hate seeing how scared he gets, I hate seeing him put to sleep, and it has never gotten any easier, not even over time.
I just don't know how, what, or why things just can't get better and stay better. I often times find myself in a daydream of just wanting some normalcy, not for my/our sake but for his sake. He is a little boy but forced to be a man, he's not an infant who doesn't get it, he understands most if not all of this, and most of all he faces legitimate/real/personal fears that only pertain to him...and this is constant. That's the crushing reality, no matter what Amber and I do, no matter how we say it, no matter how we show it, no matter what we attempt to do to ease his anxiety and his own demons in regards to this....he's alone to his own thoughts/feelings. Its the reality of the matter and as a parent and just a loving person, it crushes my soul to no end. Its a no matter how many times I attempt to fix it, I can't. I feel that I have cried all my tears that I have available to cry but yet I still find myself shedding yet another set of tears for this unrelenting life that we live.
Thank you for all your prayers, thoughts, and continuing to follow Dylan's journey in this life...we appreciate it more than we could ever show you.
-Noah
So to say the least its pretty frustrating that this lady on the other end of the line was telling me that I have to rush Dylan to the ER, I on the other hand was advising her to read his chart and look back a few lab draws and see his trend. She then advised me that she had a prompt on her screen that said if the parents reject to recontact the ER doc again for advice. I advised her that Dylan is a pediatric liver transplant recipient, he's on medications that inadvertently lower his magnesium. His magnesium being at 1.4 doesn't concern me but the LFT's (Liver Function Tests) on the other hand are extremely alarming. I told her to take a look back as early as the last set of labs (approx 10 days prior)...she than said, "Oh, yeah, I see what you're saying now".
Now don't get me wrong, I know these folks in the call center are doing their job and doing the best they can. What I don't understand is who doesn't look back in a chart at the last few lab draws to see a trend for him. What they did is lump him together with the rest of other "normal population", as opposed to treating Dylan as Dylan. That's the stuff that irritates me, as what if we weren't as active advocates for our son, what if we weren't his voice in a time of need, what if we just didn't know any better and just did as we were told. I can say he at minimum would of been poked yet again, we would of been admitted as inpatient, and we would of been supplied the burden of that bill. If he needs it, great, we'll do it but something like this wasn't even thought about on their end. In all the years we have been dealing with Dylan's liver disease (his whole life), never once has a department called "critical care lab" called us...ever! That was pretty alarming to be getting a call like that and at the end of the day, Amber and I soak up the burden of that stress. After talking to Kaiser we of course called our transplant team at Stanford.
Stanford was of course concerned when we read the lab values and needed to consult with the on-call doc, which luckily was Dylan's doc. For those that follow this blog and unfortunately have little ones whom deal with similar issues, these next set of numbers will make sense. But even those who don't can see the shift that has taken place in only 10 days. At last lab results they lowered his Prednisone (we have been tapering for the better part of 2 months now and we were finally only on 2.5mg) but clearly after this set of labs, his liver is very unhappy and back in rejection.
Here's just a few LFT's:
- GGT 120 (last week 24)
- AST 295 (last week 21)
- ALT 310 (last week 14)
- ALK 280 (last week 138)
- Direct Bili 0.6 (last week 0.1)
Stanford advised us to increase Dylan's anti-rejection medication (Prograf) to 2mg (which is up from 1.5mg, it doesn't seem like much but that's a huge jump on this medication) and to increase his Prednisone to 10mg (which is up from 2.5mg, 4x the amount of what he was taking before). I know I have talked before about the necessary evil both these drugs are but its really heart wrenching to see him increasing in Prednisone again...this stuff is evil (at this time necessary evil) and just horrific stuff. It makes you gain a bunch of weight (water retention), causes you to constantly be hungry and get no fulfillment from what you do eat, and makes you beyond irritable to name a few. I hate seeing Dylan on this steroid, he just isn't himself, and is often very unhappy/depressed while on it in high doses over extended periods of time (which has been over 3 months now).
In addition Stanford has requested labs again tomorrow (07.25.2013), they said if his labs don't meet criteria, they will be admitting him for liver biopsy and IV steroids. They didn't give us a threshold but I imagine it needs to be dramatically different for us to avoid this scenario. Whatever needs to happen is what we'll do but I would be lieing if I didn't say this stresses us out to no end. I hate seeing how scared he gets, I hate seeing him put to sleep, and it has never gotten any easier, not even over time.
I just don't know how, what, or why things just can't get better and stay better. I often times find myself in a daydream of just wanting some normalcy, not for my/our sake but for his sake. He is a little boy but forced to be a man, he's not an infant who doesn't get it, he understands most if not all of this, and most of all he faces legitimate/real/personal fears that only pertain to him...and this is constant. That's the crushing reality, no matter what Amber and I do, no matter how we say it, no matter how we show it, no matter what we attempt to do to ease his anxiety and his own demons in regards to this....he's alone to his own thoughts/feelings. Its the reality of the matter and as a parent and just a loving person, it crushes my soul to no end. Its a no matter how many times I attempt to fix it, I can't. I feel that I have cried all my tears that I have available to cry but yet I still find myself shedding yet another set of tears for this unrelenting life that we live.
Thank you for all your prayers, thoughts, and continuing to follow Dylan's journey in this life...we appreciate it more than we could ever show you.
-Noah
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