Hard to believe its been 3 years since this day.  I remember it like it was yesterday but on the other hand it feels like a lifetime ago as well.  I want nothing more than to type this and say how great everything is but I can't.  I can't for the sake of being accurate, being honest with ourselves, and you whom diligently follow this journey with us.  

Our past year has been in some ways hell-ish.  Significant changes have taken place, lots of meds added in, and lots of uncertainty remain.  This month marks his 9th month in a fairly consistent state of liver rejection (If I recall, we've had 2-3 sets of ok labs during this time frame but was always followed by bad sets for x amount of time).  

As of yesterday, Dylan is in a state of bad labs.  The most troubling aspect of that is he's on triple immunosuppression (Prograf, Rapamune, Prednisone) and its still climbing.  This has been the never ending trend over the last 9 months but now he's on multiple drugs in an effort to combat these things...its just not working (yet anyways).  In addition, a few weeks back Dylan and Tegan got the flu (both are vaccinated), for Tegan it was 7-10 days of on/off fevers and a general miserable well being.  For Dylan, it was multiple doctor visits, multiple breathing treatments, fevers, and as if that's not enough he also got pneumonia as a secondary infection.  That is 2 years in a row that he has succumbed to this from a common cold/flu.  That's unfortunately the life of a transplant recipient....never just a simple cold or flu, never just a normal kid getting sick.

Aside from the stuff listed in previous updates and the above just mentioned, I suppose I will just keep things at that, as there isn't much reason to go on and on about things.  Amber and I are having a hard time with everything, we really just want things to be better and for things to make a turn for the best...it just seems never ending at times and I'd be lieing if I said its not hard.  It's hard watching Dylan suffer at the hands of these drugs, medical procedures, and the constant up/down of the life that comes with this.  I know things could be worse, I know we are lucky that he is still here and relatively still doing "ok" but at the same time we can't help but fear the unknown, as well as the never ending chaos that his life currently is on.

As I reflect back on this day, I will never forget our conversation when we all met with Dr. Esquivel some days prior to transplant.  He very matter of factually advised us that post-transplant life vs. pre-transplant life is very challenging and often times can be worse.  Everything from the challenges of surgery, to the meds, the side effects (cancer related stuff), to a failed liver and starting over, and/or death.  It wasn't said to intimidate or cause fear, it was said to advise on what could be.  As with anyone in this scenario, there is no option...you move forward and hope/pray that all goes well.  I feel very fortunate that Dr. E had this "real" conversation with us, that he didn't pull the doctor card and act detached, and/or sugar coat it.  He had a from one parent to another conversation about the difficulties we might face.  The only thing I feel sad about from this conversation is that these things he talked about in fact include us.  I can only blame myself for having such narrow minded hope that this wouldn't be how it is, I had such an overwhelming sense that if I could just donate my liver to Dylan; that all would be ok.  Almost as if that was my purpose in life, my reason for being born, my gift to him....sadly that was nothing more than fantasy in my head and to be honest, it's extremely hard to grasp and see the reality of all this.  Its sad, its frustrating, mostly its painful.  I'm not a religious person per-say but I have done my own bit of asking for help from whomever is listening...I feel after 8.5 years, it just may be time to realize we are on our own with this life. There isn't a day that goes by that I wouldn't sacrifice my soul to give him simply a 1% better chance to just be better off today than he was yesterday.  

I don't know what more to say at this point.  I'm grateful for today because I know others have it worse off than us but it doesn't take away "our" pain of what "we" deal with and how "this" path has been going for us.  I typically say I hope for better days to come but rather than saying that empty saying...perhaps I should just say I'm hoping we are just ready enough for the continued fight I know we face.

Thanks for keeping Dylan in your thoughts, if only for this moment...we greatly appreciate all your support.

-Noah

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

It has been awhile since our last update. I am sorry for keeping those of you who don’t follow us on Facebook hanging. Dylan’s health has been “stable” since his hospitalization. The dose of IV steroids and tapering dose at home (which he is still on) seems to have corrected the rejection he was fighting. We have fought very hard the past 6 months to get his liver in the great working order it once was. Dylan continues taking the Prednisone and increased dose of his Prograf (anti-rejection medication). He has been getting labs done every two weeks to follow lab values and make adjustments as needed. It feels we live our lives two weeks at a time. Never really knowing what is in store next. If his numbers are good we get to stay on the course we are on, if they come bad our course is diverted in a different direction.

Dylan's liver numbers have consistently been getting better over the past two months. Each time they improve more and we are able to lower his Prednisone dose. Due to his rejection episode we have been running his Prograf at a higher level in his blood. Before the rejection his troft level (the level of medication in his blood 12 hours from his last dose) was kept in the 2-3 range. Since his rejection we have been keeping his level between 7 and 8. This dose has been higher than he was ever on, even immediately after transplant. His system just like lower levels of the drug. It has been necessary though. We have had to "reboot" his system into thinking his liver is his own. Not an easy task.

Sadly, during this fight, his kidneys were irritated in the process. One nasty side effect of the Prograf is it can be very hard for the kidneys to process.  It is known to cause nephrotoxicity (a poisonous
effect of some substances, both toxic chemicals and medication, on the kidneys). For the past six months Dylan's Creatinine (a kidney function test) has been creeping up. I noticed that Dylan’s urine output had slowed down drastically last week. He had only been urinating a couple times a day despite his intake. He was constantly thirsty and drinking water. Knowing his kidney function was leaving something to be desired it obviously concerned me. At that time he was also running a low grade fever. After consulting his transplant coordinator I took him in for labs and a urinalysis. I can't say I was shocked at the results. 

It is always hard for me to see the numbers come pouring in. When we have his levels checked at Kaiser I get the results before any doctor and usually in the middle of the night. The levels for his kidneys were above the "normal" range and were pretty high for a child in Dylan's age group. Oddly, he was also having abnormal levels in his red blood cells. He was extremely anemic. Now, I am going to admit something here. I suffer from some serious post traumatic stress disorder. Watching your child vomit blood is not something easily erased from your memory. When Dylan suffered his GI bleed I had his labs done just prior (not knowing what was wrong with him). The lab results from that horrible day and his current results were far too similar. I could feel the stress building up in me. Now, I didn't really think he was having another GI bleed , but seeing those numbers seriously made me question what was wrong with my little boy. I emailed over his results to our coordinator so she would have them first thing in the morning. It was a long sleepless night for me. Thoughts were racing and emotions were high.

We heard back first thing in the morning. I was told to lower his dose of Prograf immediately and she would get back to me after consulting his team. She also reassured me that he was not having a bleed. Her guess is that he was fighting a virus of sorts and that it was suppressing his bone marrow. Not exactly a comforting thought, but much better than the alternative. Later that afternoon I got a phone call confirming that he was to stay on the lower dose and that we would repeat labs the following week.  We all went on about our week. The kids enjoyed school activities, parties and some trick-or-treating on Halloween. Dylan was a skeleton and Tegan was a peacock.

Saturday morning we woke up to another surprise. I thought Dylan had been replaced with some other child. He was so swollen and puffy I could barely recognize him. I sent his coordinator a text and asked her to look at a picture of him. She told me to call  the on call doctor at LPCH right away. There was the usual back and forth one would expect on a weekend, but I did finally get in touch with the doctor at LPCH and we came up with a plan. She told me Dylan needed to be seen and that his labs should be repeated. I called and made an appointment in urgent care for later that afternoon. We needed to see where his numbers were and determine if he was going to have to be admitted or not. The Kaiser doctor was great. He walked in and asked me what I needed him to do. I guess he could tell I was on a mission. After a quick exam he ordered some labs for Dylan (STAT) and we were on our way.

After a short two hour wait at home I had results and emailed them over to LPCH. The on call doctor called me and said she was pleased to say Dylan's labs were stable and that all the "scary" possibilities were not a concern for her ( I already knew that). His liver enzymes were up a tiny bit and his red blood cells were even lower (increased anemia), but his kidneys had not gotten worse and she felt safe letting him wait until his clinic appointment we had scheduled Monday. It feels at times there is never a true break for Dylan. While driving to the clinic Saturday he had a complete break down. Tears, anger, and frustration overwhelmed Dylan. He doesn't want to do this anymore. He wants a break from all things medical and I don't blame him.

Monday we made a trip to Lucile Packard for a follow up. It was the usual 2 hour drive there. Tegan slept the whole way. Dylan and I just talked and sang some songs. He does travel really well. At our appointment we discussed what was going on with Dylan. His doctor felt that his kidneys took a hit from the high doses of Prograf, but was hopeful that with the lower dose he would bounce back unharmed. He also felt that his bone marrow was being suppressed by some type of virus. We are going to recheck his EBV and CMV levels next week to make sure it is not either of these. Both of these viruses can be pretty scary after transplant. We were also told to repeat that rest of his labs next week as well. If his liver is still happy we will lower his Prograf dose again and hopefully stop his Prednisone for good. We left and headed home with a solid plan. Little did we know we weren't done yet.

From Monday to yesterday Dylan started having breathing issues. I noticed that with every breath out Dylan was grunting and he had developed a funny cough. His lungs sounded very clear (Yes, I have a stethoscope. I also have an otoscope. You just never know). Now, here is where life is unfair for Dylan. He had been to the doctor twice and labs twice in less than a week, but I had to take him back in. Post transplant with water retention and low blood counts can be a very bad situation very fast. It is very possible to have fluid "push through" into the lungs and cause pneumonia. With all that he had going on I couldn't take a chance. I made him an appointment and took him in AGAIN. His regular doctor did not have any appointments, but I got him in with another one that I like. I have developed a list of "approved" doctors at Kaiser. There are some that I don't work well with. We did run into his doctor in the hallway and he said he wanted to see Dylan when were finished with our appointment. It was a quick appointment. The doctor had us do a chest x-ray to rule out pneumonia. I was really proud of Dylan. Since I had Tegan with me I couldn't go back there so he went back alone and did a great job. He is growing up so fast and amazes me everyday.

The results were "unremarkable". Fancy word for everything looks good. We were led to his normal doctor's office to wait for him. When we first met Dr. Morales Dylan was 10 months old. This
doctor has kept me sane and led us through so much. He never questions my feeling or thoughts and ALWAYS validates me. I have joked that he is the only one who gets "my crazy", but it's true. I remember being on the phone with him as Dylan vomited blood. I remember hanging up on him and I also remember him calling us in the ER to check on him. Dr. Morales is a remarkable doctor and person. We are blessed to have him in Dylan's life. Yesterday he just wanted to check in on Dylan. He told him that he was so proud of him for all he goes through and how well he handles it. He said he just wanted to let Dylan know that he is always checking in on him and that he is always on his mind. Like I said we are blessed to have this man in our lives.

For now we are starting up his asthma meds again. We will need to be watchful for thrush in his mouth since he is still on the Prednisone, but I hope it will correct the breathing problems. We will recheck labs either today or early next week to make sure everything is improving with the medication change. As always we would like to thank you all for following Dylan's journey. It really does mean the world to us.


-Amber

Due to the most recent unsteadiness of Dylan's ongoing battle of up/down LFT's (Liver Function Tests) and that he's been battling "something" for the last 3.5 months (which we have all assumed was ongoing rejection from when they attempted to switch Dylan's anti-rejection medication), the docs at Stanford advised they needed to do a liver biopsy to determine what they're dealing with and how aggressively they need to treat it (the most recent big push was due to him not responding to the high dose of Prednisone and increased dose of Prograf).

The day started like most, which unfortunately started a few days beforehand of him being super anxious to "be put to sleep".  As most can imagine, its scary, its hard, its rough for anyone at any age, but then put yourself in his shoes...one might think, "well he's been through so much, I'm sure this is easy for him and it gets easier with time".  Truth be told, its even harder...each time is new challenges and new fears, each time is harder than the last and this time was no exception.

Being that Dylan is getting older, he no longer is the first to be seen (which makes perfect sense as he once was the younger kid who took priority) but it poses its own set of challenges, as it means he goes even longer with no food/water.  Being on a high dose of Prednisone makes this even more frustrating for him b/c he's starving and so thirsty.  Needless to say by the time it was his turn, which ended up being around 2:30 pm (they were running behind b/c apparently an emergency transplant was done in the middle of the night).  He was just really upset and uneasy about having to do this again.  As much as I wish I could say we can talk him down and get his feelings settled, truth is who are we to tell him all is well and going to be well and "don't worry, this is easy" and have it make a real impression.  Although we do say a lot of those common things, I always make sure to stress more that this is just something he has to do to ensure he is safe and it will be over soon enough.  To me that is the proper thing to do, not just fill his head with words for the sake of using words, which to me in essence is lieing to him and I'm not going to do that to him.  He is a little man, although a child, he is structured around unpleasant adult things in his rather short life thus far and it seems only fair to treat him as the young man that he is and not just say things to say things.  He is very smart and deserves to understand that we understand his fears and what he's about to go through but in the end he has to do it.

As a background, Dylan doesn't use gas induction (he was traumatized as a child during a procedure at Kaiser and honestly so were we as parents), so he opts for them to use an IV with either oral or IV versed ahead of time (this drug is suppose to relax you and more or less cause amnesia) and then they push Fentanyl (pain med) and then the Propofol (medicine that makes you go to sleep).  In the OR Dylan was surrounded by lots of people (about 9 people in this fairly small room) , the versed clearly wasn't enough if you ask me b/c he was still super scared and fighting it the whole way.  So the doc let him push his own Propofol, so he could be in "control" of him "going to sleep" rather than it being forced on him. Although I appreciate this gesture, it was super hard to watch these big decisions that I myself would find hard to make in his situation.  I really do appreciate how the team interacts with Dylan though, they really do attempt to do everything they can to make things as easy as they can.  In the end, it just comes down to he's been dealing with this all since day 1, now at 8 years old...he is grown up enough to know things are even more scary and harder.  He has to make those hard decisions and be forced to do these things that really no kid should ever have to do but yet he knows he has to.

Upon Dylan waking up in recovery things just took a turn for the worse.  In the past, this has just been a slow couple hours of waiting and watching vitals, but this day was different.  Dylan was in excruciating pain and screaming "oh my god, oh my god, I'm in so much pain".  I looked at the nurse and said this isn't right, this has never happened before and he is in a lot of pain.  Dylan is a mentally tough kid, he also has a pretty high threshold for pain as well...its not like him to complain for the sake of just complaining.  So I knew upfront this just wasn't right and might I say...very heart wrenching to watch.  The nurse keep saying to me that she thinks he's confusing pain for "gas'.  I said no, this isn't gas...and to please call the docs.  Soon enough the fellow showed up and said he agreed that it was unusual to see pain with a procedure like this, as mentioned before I stated he has never had pain like this after one of these.  I asked if anything was different this time and he said "we had to go at a more drastic angle, typically we go at  45* in from the rib area but they need to go way up underneath and almost parallel with his ribs and perhaps this is why", he then added "there is lots of nerves in that location and maybe we hit a nerve bundle".  I said that was my exact thought, as I deal with nerve pain myself daily and Dylan was exhibiting nerve like pain issues.  They at this point had already given him 2 additional doses of Fentanyl and it had zero affect on his pain, it didn't even come close to denting it.  I asked for something stronger like Dilaudid b/c clearly he's in agonizing pain and its not normal (FYI- this is the grand daddy of all pain drugs, roughly 10x stronger than Morphine).  The fellow advised me he would call Anesthesia as only they could make that call to administer that drug.  In addition to doing the Hematocrit &  Hemoglobin lab draw (this is used to check before/after a surgery, its a good marker to see if one is bleeding, basically they look at the differential of before and after), he was going to order a chest X-Ray and Ultrasound to ensure there was no internal bleeding going on (although this was all unlikely, they were just covering all the basis's).

Soon enough Anesthesia came to visit and agreed he needed something more powerful and agreed Dilaudid was warranted.  While the orders were being processed X-ray had made there way down and snapped the film they needed.  Shortly thereafter Dylan got a tiny dose of Dilaudid (If i recall it was 2 micrograms), it was short lived though...just 10 mins later he was screaming in pain again.  The followup dose was easily 3x the amount of that first dose and its what did the trick.  Dylan was finally out of pain and just in time for the ultrasound tech to show up.  Once Dylan was stable we were finally released to 3 South (Transplant Wing).  Only downside was now it was so late the cafeteria was closed and Dylan wouldn't be able to order any food...at this point he'd been without food for 24 hrs.

Once we got to the room I knew it was going to be a long night.  We were paired up with a 2 month old baby, from what I understand had just had a kidney transplant.  At this time it was time for Amber and Brea (Amber's sister whom we've been lucky enough to have in our lives helping out with our kids while Amber works her new job) to head out, as siblings aren't suppose to be in the hospital past 9 pm.  Dylan and I watched some TV for a bit but I couldn't help but overhear our neighbors, whom were clearly upset, bickering, and just yelling at their 2 year old kid, it was easy to tell they were just in an unhappy place at the moment.  The nurses had advised them that their daughter couldn't spend the night in the hospital and they would need to find other arrangements.  I knew how this went b/c just last year Amber and I dealt with the same scenario.  As the couple were working things out it was obvious that this was a new way of life for them and I couldn't help but reflect back on ourselves and recall how challenging and hard it was when we first started dealing with and learning about Dylan and never even grasping the ride of a life we were in for.  I wanted to step in and say something, lend a hand or support but I decided it wasn't my place and kept quiet...I tried to think back to my mid 20's being in their shoes and thinking if someone came at me in that moment, I probably wouldn't of appreciated it....so I decided not to be that guy.  I can only hope that the couple makes it through this life, its very challenging to say the least and the toll on us as couples is enormous.  As we drifted off in an attempt to sleep, it was short lived.  Those who have ever been in a hospital know the sounds and constant in/out of the room just never end.  Put yourself on a transplant floor and you know that this is an unpleasant means of spending an evening and to top it off the 2 month old was clearly not very comfortable.

Morning came to the Transplant Team (known as the Green Team) to do "rounds", which is where they come by and follow up on their patients.  They met with me (Amber had to be at work, so it was just me a Dylan while Brea watched Tegan at my cousins house nearby) and advised that they were going to push for Pathology to get things done more quickly so they can have a course of action sooner rather than later and b/c the biopsy was done so late, they didn't want to wait until the evening to find out what they wanted to do.  To my surprise only about 2 hrs later they came back and said, "They saw 2 lymphocytes but 3 is criteria for calling it "rejection". So they can't classify it as rejection but they are treating it as such".  They advised he was going to be getting an IV bolus of high dose steroids that day and then we'd be sent home later that day with a high dose Prednisone taper (this new level will be 6x his already high dose he's currently on). He will be due back here at Stanford for clinic and for a long time from here on out (to closely monitor him.

Off the record they said he's probably been in rejection for these last 3+ months from when they attempted to switch his anti-rejection med (which is what we all suspected and the current Prednisone just hasn't been enough to fully get rid of it) and he needs this treatment to hopefully push him past/out of it. This treatment is for rejection, although on paper they won't call it that but are treating for it.  So he was administered a high dose of IV steroids (310mg of Hydrocortisone), then will be doing high dose Prednisone taper starting today and tapering daily  (60mg/50/40/30/20/10) and back to his high daily dosage of 10mg.  There is no end in sight for him being off of this stuff. He is still on high dose of Prograf as well.

Not only have we started over, we are worse off than the day after transplant at this point....it's frustrating but I expect nothing less with this complicated life.  We are doing our best to stay strong and think positive, we truly hope the future holds something positive very soon for our little man.

-Noah

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:

• 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

Just about two weeks ago we took a leap of faith and attempted to give our little guy a more "normal" life. We went on this journey hopeful to improve Dylan's quality of life.  Everything started off great. His labs were perfect. In fact, they were the best they had been in over a year. We were able to get Dylan off of his original anti-rejection med (Prograf) relatively quickly. It was only four days into the wean (usually takes 1-2 weeks) and we dropped it. At the same time the level of Rapamune (the new med) in his blood was at goal in just one dose. Everyone was pleasantly surprised at the ease of the switch. We felt as if Dylan was finally getting a much deserved break from his many ups and downs. In short we were on cloud nine. Sadly, there was a very dark cloud in the distance we were unable to see.

A week into Dylan's transition we were enjoying not having to fast before and after his medication. Dylan could eat and drink whenever he wanted. There were no tears throughout our day due to being hungry and having to wait. After two years of the same routine it was a breath of fresh air. Dylan was really enjoying his new found freedom.  At this point Dylan had been getting labs twice a week and like I mentioned before they were beautiful. Day nine was a different story. I always open the results online with one eye open. It seems nerves always get the best of me at that moment (I am not anticipating it will get any better). My heart sank when I saw the numbers. Over the past almost eight years I have become an expert at deciphering lab results. I knew in that moment something was up. I immediately called the on-call GI at Lucile Packard. I wanted to make sure that whatever was going on was caught early. My gut was telling me that is was not something small and should not be ignored.

I spoke with the doctor letting her know what was happening with his labs. She too felt like we should repeat labs the following day just to follow them and see which way they were going to trend. We had decided that doing them locally would be fine as they were not at a dangerous level. I am sure some of you are thinking that you would never know what to do in these situations, but let me tell you, a parent's intuition is a very powerful force and near impossible to ignore. After about an hour I received a phone call from the doctor again. She had spoken to the attending and he felt it was necessary to do labs at their center so the results could be looked at prior to the the holiday weekend. So I went to bed to prepare for a very long day. 

It was a very early 6 am wake up call. Tegan, Dylan and I got into the car and started the trek down the freeway. It really doesn't seem like that far, but it is such a long stretch of road and commute traffic only makes it worse. I guess the one good thing about driving early is the kids usually go back to sleep; making it pretty peaceful in the car. It took nearly two and a half hours to get there. Once we arrived we got labs done and I went to get some food for the kids. I wanted to stay close by for a few hours just in case they decided to see us if labs were bad. At about 11 am I decided no news was good news and drove home. I knew that it was a long weekend and spent most of the afternoon calling our coordinator to get results. With about 20 minutes until the office closed Noah finally got a hold of her. The coordinator told us the labs were great. When Noah asked for specific numbers we quickly realized that her idea of great and ours were very different. Noah demanded that she speak with his GI and get back to us. When she called back she told us to repeat labs again on Tuesday (Monday being Memorial Day). I was pretty nervous to wait since his numbers were creeping up each day. 

Tuesday morning could not come fast enough. Dylan has been feeling pretty good despite acting a little goofy from all the steroids, but the fear of what was going on inside of him killed me. After his blood draw, the day dragged. It wasn't until after eight that we finally got the results. It was a nightmare realized. Seeing numbers ten times higher than what they should be is never a settling feeling. Knowing your child's vital organ is angry is even more so. I again called the GI on call to get a game plan. I was told that in the morning they would discuss Dylan and that I would be called with a game plan. I waited and waited for a call. Noah and I emailed and called multiple times to get some sort of plan. The key word is waited. All day long. No response. I emailed our regular coordinator who is out of town making my feelings on the lack of phone call well known. It was no shock that in a very short time frame after that we received a long awaited phone call. 

Surprise, surprise...Lab work and clinic the following day at Stanford. The doctor also wanted Dylan to take a very hefty dose of Prednisone as well as restarting the Prograf. There was an instant feeling of defeat. My poor baby was having to take two huge steps back and the joy that he had from his recent freedom was being taken away. Dylan deserves a break. He has been through so much in his life. I told Dylan what the plan was and I could see him fighting back the tears. I too was fighting back the tears. Sometimes life is just unfair. Sometimes bad things happen to good people. 

Today we made another trip to Stanford for repeated labs. We were pleased to hear today the the Prednisone and added Prograf helped to drop his labs almost in half. Sadly, we learned today that the doctors are certain that Dylan is in rejection. They believe that his Prograf may have been weaned too aggressively. For now our only plan is to get his liver happy again. His doctor wants labs normal by next week. If they have not improved Dylan will be admitted for IV steroids. We hope that this is not the case and come Monday everything looks much better. As always, thank you from the bottom of our hearts for all your love and support. We could not do this without you. 

-Amber

Over the course of the last few months we've had some sense of relief with Dylan's liver.  No major hiccups since beginning of the year (which has been nice for a change).  Early on we were advised that it can take a good year or two to get things to a point where life settles down a bit and its not so much of a race back and forth with complications after complications.  Although I consider our journey less troublesome than others, we've for sure seen our fair share of hard moments over the last 2 years post-transplant.

As things have been what we consider "good", they've also been very challenging as well.  As with so many complicated things like this, there is also some sense of a trade off.  Over the course of the last 2 years, Dylan has had major and often times very scary allergic reactions.  Pre-transplant Dylan was allergic to dairy and peanuts but post-transplant that list has grown and comes up out of nowhere at times.  

Just a few months back we were at Lake Tahoe enjoying Dylan's 2 year Transplant Anniversary and yet again he had another anaphylactic allergy attack...this was especially bad and we probably needed to go the hospital but Amber was able to catch it in time and Dylan was able to get it all out of his system prior to needing to inject him with our EpiPen (although in hindsight we should of).  When you go into anaphylaxis your blood pressure drops among throat closing/swelling and a whole slew of other issues.  The blood pressure drop is especially troublesome in Dylan's scenario b/c he has a really small  Hepatic Artery, which if it clots off or collapses would require another liver transplant.  Its such a fine balance this life, from timing of medications, to nutrition, to allergy interference, and still trying to just be a normal kid growing up.  Dylan has of course become very scared of trying anything new and eating out at places is very difficult for him, as for him even though we have told him to trust us and we've read all the ingredients sometimes its just not good enough and an attack happens.  Imagine being 7 years old and going through what he has and overcome and then fear what you eat.  One of the biggest culprits of the allergies changing and having no rhyme or reason to their behavior is due to his anti-rejection medication (Prograf) that he takes.  Dylan forever needs to be on anti-rejection meds (hopefully someday this will change but for now and the foreseeable future, this is how it is).  The med is a double edge sword, he needs it to keep his liver happy but at the same time this toxic med is responsible for uncontrollable allergies and high instances of cancer among transplant patients.

Dylan has consistently had chronically high Eosinophils in his liver, which are immune white blood cells, these are speculated to be what is causing his constant inflammation in his liver and hyper sensitivity.  At last clinic visit with Stanford, they advised about us switching his anti-rejection med to another one called Rapamune and that it should be discussed and considered due to his allergy issues.  We have looked up all the pros and cons and at this point see it as his only options available given medical science today.  Its a scary time to do this and embrace it, as its a super fine balance to regulate.  Dylan will need to be tapered down from his Prograf, while adding in the Rapamune and start a therapeutic dose of Prednisone (I hate this stuff too, its evil) but this is done an an attempt to keep his liver happy during this transitional period.  The process will take many weeks/month(s) to be completely done with.  Although it has lots of upsides, the risks of downsides is overbearing at times to think about.  I feel like we just got his liver to a  point where its semi happy (but in looking back its only been about 3-4 months, but as parents who have been in/out of hospitals, tests, and procedures for 7+ years, this break although semi short has been nice....a nice change to say the least).  

The risk of this new med carries a lot of the same negative issues as its literally a derivative of Prograf but just has less clinical side effects (or so they've determined at this point in time).  It still has risk, it still has the potential of bad things, but the risks outweigh our options at this point, lesser side effects is better than the alternate; its crummy to think that way but its the only thing one can do.  We have to give it a shot and hopefully by the powers that be, its better than Prograf.  Trying everything in our power to give our little man the best life given his circumstances in his life.  I know we are in for hard times over the course of the next few weeks (labs every other day, clinic visits, etc...) and at the end of this time I hope what Dylan is subjected to this go around is for the betterment of his future.  

As always thank you for constantly thinking about our family and keeping Dylan in your hearts. 

-Noah

Today is Dylan’s 2 year Transplanniversary.  Hard to believe another year has come and gone and here we are writing about it again (which is a good thing).  Rather than do a complete breakdown of how challenging our past year was, I’d rather only go back a few weeks and give insight of how our lives are lived from day-to-day, week-to-week, month-to-month, and hopefully this time next year I will be able to just use the term from year-to-year. 

We are always brought back to reality of how fragile Dylan’s condition is.  It’s something that we never get total relief from, even on the “good days” which we call uneventful times; it’s always in the back of our mind that something can go south in a blink of an eye.  It’s not a matter of being negative or looking at the glass as half empty but rather this is reality and this is the reality of a liver transplant kid whom is on crummy immunosupression drugs.

Just 2 weeks ago Dylan was hospitalized for 4 days due to what mostly was a bunch of normal/small things that quickly turned into a bigger issue.  Our assumption is his common cold he got from school, turned into double pneumonia (around this time we had labs and they were showing signs that he was fighting a bacterial infection but the docs didn't agree and wouldn't prescribe antibiotics like we requested), which in turn ran down his system even more, which then turned into him getting the extremely contagious Noro-virus…which further dehydrated him even more and only then did they agree and start treating him for ascending cholangitis (which is a bacterial liver infection).  So 3 full days of IV antibiotics + fluids were needed to get him back on his feet, an additional day for observation to ensure he was feeling good again and finally he was released from the hospital.  At least we were out in time to enjoy our wonderful trip that was upcoming the following weekend.

Virtually 2 years ago to the week…we were in the same spot as we were this past weekend.  We were fortunate enough to have been welcomed back to The Ritz-Carlton Lake Tahoe, which is where Dylan’s Make-A-Wish trip was back in 2011 (just a week or so prior to his liver transplant). 

The Ritz-Carlton Lake Tahoe is more than 5 star amenities, more than the glitz and the glamour of a luxurious hotel…and let me tell you; those simple/subtle words do not do this place justice, its beyond fabulous in every imaginable way.  This place is an experience; from the folks at the valet whom ask you how you are, to how your drive was, to saying they’re happy you’re here.  Its crosses all boundaries of what service is all about.  When you stay at the Ritz, you’re truly welcomed like a family member and not one that is awkward like Thanksgiving dinner; it’s like your every hope/dream of what and how one should be treated.  When you’re here, you’re pampered…and not just by way of the finest decor, the softest linens, and/or the most exquisite material things but rather by way of the amazing people.  The folks that work there must truly love there jobs, its shows in there everyday dealings with people and it’s a breath of fresh air to say the least.  It’s the epitome of the human experience.  That is what makes The Ritz-Carlton what it is.

I must say being able to spend the weekend in the same spot as we left off 2 years ago, which was a place of not knowing how things would be, how they would go, or where we would even be in 2 years…it was nice to be allowed that experience albeit only have been for 2 days; I can’t thank certain folks enough who made it possible for us to be there on such a special circumstance.  It truly gives hope and a tremendous feeling of being very blessed for those folks who give a piece of themselves for the sake of others.

As always we thank you for your continued thoughts and prayers for Dylan this past year, unfortunately this past year we have seen our fair share of the hospital, turmoil, and lots of emotional days that feel like a roller coaster ride but we truly believe better days will be in Dylan’s future, its just a matter of when that shift happens and those days of heartache become fewer and far between.  We know it’s a lot for folks to read and take in and it’s ok to think to yourself that thankfully this isn't your life.  Although we don’t wish to change any aspect of our life, we certainly wouldn't wish this on anyone as well.  But at the end of the day, we feel very honored and blessed to be Dylan’s voice, to be his parents, and to be his fighter’s on his behalf.  It’s what makes our family who we are and we thank you for taking the time out of your lives to read a bit about ours.

Here’s to hoping for a less eventful 2013!

-Noah

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This is copied from my facebook. I will update more with more info when we have it, but did not want to leave anyone hanging...

Thanks you for all the prayers and well wishes. Dylan will not be needing a biopsy on Wednesday. With the exception of his bilirubin and his neutrophils all of Dylan's lab work seems to be trending down. So now we need to figure out why his bacterial fighting white blood cells are elevated and why his bilirubin is still elevated. May need a course of antibiotics as it looks like a bacterial infection may be brewing in his liver (cholangitis). I will be making a call to his docs in the morning.

-Amber