Dylan W Levy
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1/22/2014

4 Comments

 
PictureDylan 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   

4 Comments
Alice
1/22/2014 06:17:45 pm

When we started this liver disease life, many doctors told us that a transplant was changing a disease for another one. And now that we are post transplant I understand it. Unfortunately our kids will have to deal with a chronic disease for life, they will have to endure hospital stays, blood tests, biopsies, MRI, ultrasounds and they will have to take medication forever. BUT it is like this or it is death. So you just keep fighting for Dylan, we just keep going on. We, parents, we will never be happy again, this is a pain in our hearth that will live forever, but our kids can be happy. Sometimes it just takes longer that we had expected but Dylan will get there, I'm sure! And you and Amber are amazing parents, so do not feel that you have taking wrong decisions! We have to decide things that no one should decide for a son. We should be deciding their clothes, their birthday parties, movies to watch with them, not life decisions... We do our very best Noah. And you are one of the very best liver dad I know!

Alice ( Martim's mother)

Reply
Noah
1/25/2014 04:45:52 am

Thanks Alice...really appreciate you taking time to write this, it means a lot to us. Only folks like us understand these type of difficulties and challenges we all face with our kiddos. Really hoping that a turn for the better happens sooner rather than later, although I know things could be much worse as well though. Always grateful but at the same time can't help be frustrated and hurting for Dylan's sake at times.

Take care and thank you again!

-Noah

Reply
Ed - from Dallas
1/31/2014 12:47:34 am

Hi Noah & Family,

I have not checked back on Dylan for awhile, but I have not forgotten. I too wait, for that day, for that post, months gone by, that everything has been great for Dylan, and I am frustrated too that has not come for either him or your family. As Alice stated above, as did you, I have no idea what you and your family and Dylan go through every day, every minute sometimes, but also as Alice nobly said, what is the alternative. Some people are born short, some people are pretty, some are smart, and some are mean, and many cannot change their lot in life. Dylan was born with a bad liver, but thanks to his GREAT DAD, he has a fighting chance to change his lot in life. His life is still young, so he has a lot still to look forward to. I can only imagine how much it sucks watching him go through this and now leading to his anger of it, kids do want to be kids, and they mostly do not quite understand the preciousness of life, whether healthy or not, rich or poor, sad or happy. It is all fleeting.

I still hope and pray for Dylan, and I do believe that you guys just have to keep trudging through this part of his life, and that at some point, hopefully soon, either a drug or procedure or occurrence will happen and finally get him to where he, and you, want him to be - for Alice too.

Never doubt you are both great parents, and you cannot be held to a standard of making every decision perfectly, so get that out of your head.

Kids get angry with their parents all of the time when they are told they cannot play on the team, or they have to do their homework, or they can't stay up late. Dylan's world is just more complicated and complex, but I think he will come to an understanding at some point too. He will have to, for himself, and for the family and his friends.

Hang in there! Tell Dylan there are people out there still thinking and praying for him. Strangers! And that he is not alone is his struggles - as noted by Alice above. Honestly, his fight inspires me, although in much simpler ways, but it does. That is why I keep coming back.

I will still be looking for that post, and looking forward to that day to tell my wife and kids about that "Dylan" kid with the liver transplant from his Dad and his struggles, that he is finally fine.

Wishing you as best a year as possible!

Reply
Noah
2/6/2014 11:04:52 am

Thanks Ed. Can't express enough what your words mean to us. We feel honored and extremely grateful that you the the time to come back and check up on Dylan.

We are hopeful for that "day" that all is better as well. I wish it would come sooner rather than later but as long as it happens, we're grateful.

-Noah

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