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   

A new year is upon us but its not without its hurdles.  Over the last 8 months Dylan has been dealing with rejection, additional meds, biopsy, and the typical run of the milll that comes along with liver disease.

Over the past month Dylan was able to be weaned off Prednisone and had 2 sets of good labs, then about 1.5 weeks ago he had a set of elevated labs, which we retested at LPCH again last week and they were showing a trend downwards, we were hopeful we were in the clear.  Our transplant team advised us to retest again on Monday, which we did.  As the results came flooding in late at night we knew that our hopes and wishes for the new year were going to take a bit of a turn towards the complicated side.  Our team first mentioned that Dylan "most likely" would need another biopsy and they would touch base in the am after the on call doc could review and discuss with the rest of the team.

Yesterday was kicked off with a mid morning call from our transplant coordinator.  If I haven't said it before, I must say it now and/or again...Sarah is a blessing to our family, she is always available to us, always compassionate, and she's downright a wonderful person.  As with so many whom dedicate their lives to this work that they do; they truly do it for the love of these children.  We have always felt so fortunate to have these folks in our lives given that we are engulfed in this life and our only sanity is held in these folks hands and their continued commitment to our child.

We were advised that unfortunately Dylan needs to restart back on Prednisone (15mg dose), as they suspect the onset of rejection.  I don't think I need to go into details about how much I hate this drug.  Its the one that I call the devil and I feel sorry for Dylan and the changes that he is forced to go through from this medication; its not just the outwardly appearance (massive weight gain), its the horrible emotional side effects of this drug that I can't stand.  He becomes so enraged on it, short attention span, and an overall constant state of frustration.  It's not fun to watch or deal with.  I feel bad saying that but he is very difficult while on this drug to say the least.  Needless to say we contacted Dr. Rich (Dylan's Kaiser GI doc) and had him put in the Rx for the med.  Within a short time we were at Kaiser Pharmacy and Dylan back to ingesting the med.

In addition, the doc wants further testing done on Dylan.  They want to see if he has some level of autoimmune hepatitis going on.  Ever since birth Dylan has had extremely high Eosinophils (white blood cells of the immune system that fight parasitic infections and control/associated with allergies).  Every time Dylan has had a biopsy of his liver, there is always Eosinophils found.  The preliminary "thought" which at this point in time is nothing more than that, is that potentially his Prograf (anti-rejection med) which is known to cause major allergy issues, is causing Dylan's body to see his liver as an allergy and fighting/attacking it...as opposed to ignoring it.  Amber and I have mentioned Dylan's allergy related stuff to LPCH many times, he has been tested at Kaiser multiple times as well, and we pushed to have Stanford allergy dept to take a look into his case just last year (ironically around this same time, as we were in the hospital for a biopsy as well).  Back then they advised they didn't see any reason to continue with looking deeper b/c they didn't feel there was a direct correlation...so that was that.  But now that our transplant team wants this investigated further, perhaps we will get some much needed insight or perhaps its a dead end and we are left to look into something else.

Although our new year has started in a complex manner, just as last year and year before.  I suppose it doesn't mean this is how the remainder of the year will trend.  I will say its frustrating, its complicated, its difficult, and we have no means to know how or where we will end up.  All we can do is be hopeful that this journey brings us one step closer to peace, happiness, and above all...health in this new year.

-Noah