I told myself I wouldn't write these anymore and hence why you haven't seen updates from me.  Tonight I felt it was time for me to do an update and express my thoughts.

Less than 2 weeks have passed since our family was thinking the worst was upon us.  It was a few LONG grueling days of waiting for more results, we were extremely relieved that some of our worst fears could be set aside; for the time being anyways (when you live this life, you unfortunately don't get the overjoyed relief that all is truly ok).  Now only a week later, we are back to where we feared but not just where we were a week ago but potentially in a worse predicament.  

Every aspect of this is so hard.  We have to trust our son's life in others abilities and that they make 100% informed decisions based on our kid, his scenario, and his unique path in this life.  The medical field is one that I harbor a love/hurt relationship for.  Its something that I think anyone in our shoes would be able to relate to.  So much of this is about many factors, medical science and what they know about drug interaction and side effects of said drugs, and the teams experiences with other kids in Dylan's situation.  The hardest aspect to grasp your thoughts around is that our kid is constantly put up against this "statistic" that each of these other kids are part of.  Almost like standing in line at a deli and taking your ticket and waiting for when you're called upon.  To the person making your sandwich, you're just another salami and cheese, a turkey hold the mayo, or the guy who will complain no matter what you make for him.  I feel like in this process the human side of things can be lost in translation.  That our kid is potentially just another person holding a ticket and waiting in line.  Maybe the non educated side of me just doesn't get it, maybe being put against others is successful in this situation, and maybe I'm suppose to just let it all go and leave it to "fate".  Truth of the matter is, I just can't bring myself to do this, we have to fight for Dylan, we have to do everything in our power to ensure his health and safety.  Just the other day the transplant team informed us that we could hold off on Dylan's labs and go back to the standard protocol of labs every other month (when I say standard they mean based on his post transplant state, his labs having come down a tad, and I assume just reviewing Dylan like everyone else who might be in his situation)...what if we listened? How sick would/could Dylan of gotten?  Amber and I decided to take it upon ourselves to do what we felt was right for Dylan and do the tests today.  The results today are one that bring a lump to my throat, today Dylan's labs are back up and worse than 2 weeks ago and they're the worst we have ever seen them...ever.

Tonight we called Dylan's GI doctor from Kaiser and he's extremely concerned about Dylan and his health.  He is someone who speaks to us like family, like a friend, and just another concerned human being for another human being...the world is a better place b/c of Dr. Edward Rich.  He advised us to contact Stanford Liver Transplant Team, which we did.  The on call doctor said, she would talk to the transplant team in the morning and get back to us when she has some info.  So we sit here and wait, we worry, and we wonder if the meal we just ate will be the last one we have at home for awhile...we wonder if Dylan will now need a biopsy of his liver, will he be admitted for IV infusion, is he fighting rejection, is his EBV out of control......and ultimately what is coming next for all of us, and whatever is going on can they fix him and save his liver and stop whatever is going on in his body.

The unknown life we live is hard enough, throw in the overwhelming constant unknown health state of your loved one; whom happens to be a child who hasn't even gotten a chance to enjoy life yet and it weighs on you...it weighs like a ton of bricks and one can't help but let it affect your mental state.  I ask myself, what and where did I go wrong in life.  Was I that bad of a kid, young adult, a boyfriend, a husband, or a father?  What did I do that deserves to have my son suffer and be forced to live this life (isn't the pre-transplant and transplant hurdles enough)?  Why can't I just take it all away, why can't life just solely shit on me and not on him or Amber anymore.  I would take it all away, even if it meant my existence was to not exist anymore.  If I was given the choice to let him live a normal life over my life, I would ask where I sign up and then he can start his new life and end mine. 

We are nervous for what is ahead and can't help but fear where this is going.  There is no means of understanding any of this or attempting to rationalize the why's.  The hardships, the pain, the fear, the life of just hoping that everything we're doing is what's right...So we're at a crossroads in our lives and look to each other as well as others for strength.  Thank you for the continued thoughts and prayers for Dylan, we truly appreciate the support.


-Noah

First thing this morning we headed off to Kaiser for the lab work we had been dreading and wanting results for all weekend. Dylan has seemed very tired and had very low energy over the past few days. Dylan has a standing order which makes it easy for us to check labs at any given time if we feel things are off in the slightest. The only issue with the standing order is that most times the labs are almost always sent to the regional lab and it takes just about all day to get any results. This was concerning for us since we needed these results to decide if we were moving forward with the biopsy or not.  Well today lucky for us we saw Njoki (Joke-e), Dylan's favorite phlebotomist. After telling her why Dylan was back so soon and what was going on I was pleasantly surprised to see results back for most of his labs just  three hours later.

At the current moment we are still waiting on several results. One of them being the one of the most important tests, but for now it is safe to say Dylan is NOT dealing with rejection. In one short week Dylan's ALT (a big indicator for liver cell death) has dropped nearly 300 points. Two hundred of those points being in the last three days. There were also two other tests that improved slightly. If Dylan were dealing with rejection these numbers would be increasing and not getting better. We are still waiting for several liver tests to come back. Dylan's GGT (GGT marks inflammation in the bile ducts) being one of these. However, in the mean time Dylan's GI doctors at Stanford feel safe in canceling his biopsy.  Sadly, there is not all good news today. The dreaded EBV is back, for those who don't know about EBV, its a virus that most people will have been subjected to by the time they are around 5 years old.  Epstein Bar Virus (EBV) is main virus that effects immunocompromised people and is something that is constantly checked in Dylan's lab work.  On September 7th Dylan's EBV was negative. This means that Dylan had less than 200 DNA copies in his system. The very next day Dylan's EBV numbers were at 6,000. The doctors feel that this is where the jump in his numbers came from. We have upped Dylan's antiviral medication, Valcyte, in hopes of lowering his numbers. If that does not work we still may end up in the hospital for treatment. It is also still possible that Dylan did have some liver damage from his anaphlyaxis episode, but it's a hard one to prove. The up side to this is that if it were a clotted artery, like we feared, his numbers would again be higher and not lower.

We are going to continue to repeat labs weekly until we get his EBV under control and his liver tests return to normal. This may take a long time considering how incredibly high they were. So for now we are in another holding pattern. We are left to wait and see what happens. This waiting period is a little better considering rejection of his newly grafted liver is far from our minds with his current labs. Each time we face a scenario like this it affects Dylan deeply. It is one of the worst parts of having a chronically ill child. It is the one thing we can't protect him from...reality. Dylan's reality is a lifetime of labs, medications and medical procedures. This is something that he will live with forever. My hope is that over time it will become few and far between. I hope even more that as parents Noah and I can provide comfort for our child during these times.

-Amber

Thank you to everyone for all the prayers and good thoughts. This has really been the second most terrifying moment for us since Dylan's transplant (worst moment). Yesterday we headed to Stanford for labs first thing in the morning. It was a long drive. It seemed much longer than normal to me. Maybe it was the anxiety or the lack of sleep, but it felt like we would never get there. Dylan did well and got to see his usual person there so that helped. After labs we proceeded to the cafeteria for some food as Dylan was hungry. On our way there Dylan over heard me talking to the coordinator about what his labs were like from the day before and what was going to happen if they were bad again. The poor little guy freaked out. He instantly started crying and saying he didn't want to stay in the hospital. We tried to reassure him it would be okay and we told him we didn't know if that would even happen because his labs were not back yet for the doctor to look at. Our efforts failed. Dylan's stomach started to hurt and he starting dry heaving from fear. It was so sad to see. All the anxiety of his last hospital stay flooded back and he was terrified. It took a lot of calming down on our part and some really big long hugs from mom to get him happy again. Dylan has really learned to trust us over the years. He has learned that mom and dad do not lie to him and always tell him what is going on. We try to keep him as involved in the process as we can so he feels like he has some power and say in it all. I think it helps him with the anxiety. At least he doesn't feel like he has no control.

We had originally had an appointment set up with an allergist at Stanford for the day. His already existing food allergies have gotten worse since he got his new liver. Some of you may know that Dylan suffered from a terrible bout of anaphlyaxis last Saturday. While at a Stanford football game Dylan ate a hot dog. It said it was a Kosher all beef hot dog so I really wasn't worried as he has eaten them before.  After he ate it he told me that his throat was a little itchy. I thought that maybe there was a little milk in the bun and I quickly gave him a dose of Benadryl. Two minutes went by and Dylan said he felt like he was having a hard time breathing. I got out his trusty inhaler and gave him two puffs of his albuterol. Now normally this is all I have to do if Dylan has come in contact with any food that has an allergen in it. Normally he is fine after this and goes on about his business; that was not the case this time. Dylan started sweating and looking pale. His stomach starting hurting and he said he needed to go to the bathroom. I gave him a second dose of benadryl and off we went. It was here things took a turn for the worst. Dylan starting looking gray and got very dizzy. His pulse was faint and thready. He said his heart was racing and pounding. Now from my training as an oral surgery assistant I knew it was low blood pressure. I started to wish I had his epi pen with me, but it was down the hall with Noah and I couldn't leave Dylan alone. It was right at that time that Dylan threw up. The hot dog and all the other contents of his stomach come back up and he started feeling better. It seemed as if the worst was over, but this prompted us to get Dylan into see the allergist sooner than later.

We really learned a lot from our appointment with the allergist. I found out that I should be using his epi pen first with all severe allergy symptoms and not last like I had always thought. That would have been good to know last week. Dylan had his lung function tests done and despite asthma his whole life Dylan passed with flying colors. We have decided that we are going to be eliminating beef, all nuts and all seafood from his diet in addition to milk which has always been an issue. Dylan seems okay with the decision. I told him it meant he couldn't have his sushi for awhile and he responded with "it's okay mom...I can have an avocado roll". I love my kid...always thinking of the positive. As we were finishing up his appointment we got word about Dylan's labs from the morning draw.

So the results were in. I held my breath as the coordinator told me the results over the phone. It seemed as if everything was stable. Some of the numbers dropped slightly (good news) an other numbers didn't budge (not such good news). He didn't have any labs values jump up which is always a good thing. However, this still left us in the dark as to what could be going on. There are a few ideas as to what has caused his bump in numbers. The first idea is some type of viral infection. For me, this seems like a long shot. His labs made a huge jump. Way larger than if it was a viral infection. He has been sick before and a double in numbers is not out of the ordinary, but Dylan's numbers are more than 10 times the norm. He also has negative results for the two main virus', EBV and CMV. The next hypothesis is that during our little man's recent allergy adventures he lost blood flow temporarily to his liver with his low blood pressure. This can cause some cell death and spike his numbers for sure. The damage should repair itself but it will take a long time. The only problem with this idea is that Dylan has a very small hepatic artery, it is incredibly fragile. This is the blood vessel that brings oxygen rich blood to his liver. Being that the artery is so small it has a potential to clot off with no blood flow to it. If this is the case the ONLY option for Dylan would be immediate re-transplant. Dylan would be placed as a status 1A (the highest on the list nationally). We DO NOT want to got there for obvious reasons. The last idea...the dreaded "R" word, yes, rejection. Now this seems terrible when you hear it. However, with liver transplants it is not the end of the world and very treatable. It usually requires a huge dose of IV steroids and more at home, but it can be fixed. Given Dylan's numbers it would be really early rejection so that would make it even easier to treat. So where does that leave us..?

The game plan for now is to wait over the weekend and redraw labs on Monday. We have added a couple additional tests in preparation for a surgical biopsy. If there is no improvement in Dylan's labs we will proceed with the biopsy. Needless to say we are all less than thrilled about the idea of doing any of this, but if it needs to be done it will be. Dylan is scheduled for his biopsy on Wednesday morning. Our only goal right now is to get that liver of his as happy as it used to be. So whatever it takes we will do it. It is going to be a very long weekend. We were instructed that if there are any changes in Dylan at all not to hesitate to bring him in for labs/transfer to Stanford. So we will literally be watching him all weekend and staying close to home. We are hopeful that there will be a change in labs be Monday and that all of this will just be a bad dream. Thanks again for all of the continued love and support for Dylan. It truly does help.

-Amber

I had hoped and prayed that I would never have to write an update like this. I had wished that Dylan would be the exception to the rule. Today marks Dylan's seven month anniversary since he received his transplant. Dylan was scheduled to see his GI doctor at Kaiser tomorrow so this morning we ran labs so he would have fresh labs to look at. Some of you may remember from my last post that Dylan was not scheduled for labs until October, but God was watching out for my son yet again.

I usually look briefly through the labs when they come through on the website. Before transplant I would click on each link with my eyes shut hoping to open them to good numbers. Since transplant I open them and comment on how perfect they are...not today. Today I was hit by a Mac truck. As I opened his ALT I was in complete shock to see the number more than ten times higher than it should be. I instantly began trying to convince myself that maybe he was just getting sick. I jumped over all the other results waiting to be looked through and went for the GGT. This number is the biggie when it comes to liver health and transplant.  Dylan's number today was over five times higher than it usually is. My heart sank. Trying to forget all I know about lab values and what could be causing the jumps in these extremely vital numbers I frantically called Dylan's GI on his personal cell phone. His response was not what I wanted to hear but exactly what I knew he would say. I was told to call Stanford immediately.

I got off the phone with Dr. Rich and called the transplant team and spoke the GI on call. I proceeded to tell her what his labs looked like. I mentioned that that his labs have been rock solid since he was discharged and explained the level of panic I was experiencing. We come up with a game plan together. Tomorrow morning Dylan will be having his labs drawn again at Stanford. We will then be seen by the transplant team. If Dylan's labs are not better tomorrow he will be admitted for a biopsy and IV steroids. We are terrified and beside ourselves. I am holding out hope that there is another cause for what is going on. Hoping for a flu, cold or some other issue... anything other than the dreaded word rejection. Please say a prayer for Dylan. Pray for an easy fix.

-Amber