Dylan at Dad's shop (01.22.2014) Just a little update on Dylan. Since the beginning of this year we have been dealing with a lot of unknown in regards to his condition and the constant elevation in LFT's.
This morning Dylan spiked a fever of 103*f, which is very worrisome, as he has no real other symptoms of being "sick" other than this constant/persistent odd cough (which docs have listened to his lungs and said is nothing...although we are going to do a chest x-ray for peace of mind). In the past, him having a high fever with no other symptoms has always been related to his liver stuff. His threshold for "fevers" has always been set at around 100*f.
Knowing Dylan is super immunosuppressed, its troublesome sitting back and just wondering what is going on and if something is just lying in wait. We have yet to hear more in regards to the autoimmune stuff and the possibilities that they are pondering over. I feel like we are always on edge and that we are always preparing for the worst.
Before transplant Dylan was on about 15 meds a day. It was never fun dealing with this part of our life and honestly once we got a few months out from transplant it was such a relief being on so few meds (literally 2). As you can imagine, its not fun for Dylan...yes its all he's known his whole life but that doesn't make it any easier. He spends 4 hrs out of his day just fasting for one of these meds (1 hr before med, 1 hr after his med two times daily) and of course its always around food time frames. It's hard, it's even harder for an 8 year old. His life is nothing more than a medication/doctor induced ritual that he's exhausted from...even more sad on our end is he's become angry. Quite honestly I can't blame him. He lives a life that isn't easy for anyone, let alone a little man whom is just trying his best to be a child...although I feel he's been robbed of that luxury, which so many take for granted.
He's back on 8-9 meds again, they are talking about doing IV infusions to help his immune system (as its depleted and can't fight much of anything). It's hard looking at his list of meds that he now takes and hearing the other steps that are being taken into account into his care. I feel like we are reverting backwards at times. I often times feel guilty that we have caused some of his sufferings. If we hadn't of wanted him to be on less meds and his anti-rejection med/allergies weren't causing such major issues, perhaps we wouldn't be in our predicament that we've been in over the last 9 ish months. These thoughts haunt me...all I ever wanted was him to live a more normal life but as of this moment, we've only reverted back to a thing of the past (a prescription medically managed existence).
I'm not going to lie, I'm feeling pretty down about things as of lately. I often daydream of better days...not for me but for his mental state.
-Noah
This morning Dylan spiked a fever of 103*f, which is very worrisome, as he has no real other symptoms of being "sick" other than this constant/persistent odd cough (which docs have listened to his lungs and said is nothing...although we are going to do a chest x-ray for peace of mind). In the past, him having a high fever with no other symptoms has always been related to his liver stuff. His threshold for "fevers" has always been set at around 100*f.
Knowing Dylan is super immunosuppressed, its troublesome sitting back and just wondering what is going on and if something is just lying in wait. We have yet to hear more in regards to the autoimmune stuff and the possibilities that they are pondering over. I feel like we are always on edge and that we are always preparing for the worst.
Before transplant Dylan was on about 15 meds a day. It was never fun dealing with this part of our life and honestly once we got a few months out from transplant it was such a relief being on so few meds (literally 2). As you can imagine, its not fun for Dylan...yes its all he's known his whole life but that doesn't make it any easier. He spends 4 hrs out of his day just fasting for one of these meds (1 hr before med, 1 hr after his med two times daily) and of course its always around food time frames. It's hard, it's even harder for an 8 year old. His life is nothing more than a medication/doctor induced ritual that he's exhausted from...even more sad on our end is he's become angry. Quite honestly I can't blame him. He lives a life that isn't easy for anyone, let alone a little man whom is just trying his best to be a child...although I feel he's been robbed of that luxury, which so many take for granted.
He's back on 8-9 meds again, they are talking about doing IV infusions to help his immune system (as its depleted and can't fight much of anything). It's hard looking at his list of meds that he now takes and hearing the other steps that are being taken into account into his care. I feel like we are reverting backwards at times. I often times feel guilty that we have caused some of his sufferings. If we hadn't of wanted him to be on less meds and his anti-rejection med/allergies weren't causing such major issues, perhaps we wouldn't be in our predicament that we've been in over the last 9 ish months. These thoughts haunt me...all I ever wanted was him to live a more normal life but as of this moment, we've only reverted back to a thing of the past (a prescription medically managed existence).
I'm not going to lie, I'm feeling pretty down about things as of lately. I often daydream of better days...not for me but for his mental state.
-Noah
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