I'm overwhelmed with everything and so stressed...not sure how I'm going to get everything done that I need to get done. My brain is going a million miles per hour and even when I got time to do stuff, I don't. I don't get why I just cant formulate a plan and stick to it like anything else. Its almost like my "time" is being counted down, then once Monday is over maybe that ticker will reset? 

I hate feeling this way.  I hate that I feel like I'm on an emotional roller coaster, lots of ups, and lots of downs.  I almost feel like I'm going crazy feeling the way I am.  Its like I can laugh one second and be in tears the next.  Its really weird and I don't know if this is "normal", "expected", or if I'm literally going slightly mental.  I do know that a lot of my stress is related to the back and forth that keeps happening with the two centers, remember that Dylan will be in one end of the Hospital (LPCH) and I will be in the other (Stanford).  I know they are used to doing things and organizing there chaos the way they do but I wonder if they ever take into consideration that the person on the flip side of it all is getting mentally tossed around.  I just don't get how so many different people can tell a story so many different ways, and is this how its going to be on operation day?  I hope not.  I just want know what's going on but maybe I now know too much, maybe its not all organized and maybe this is just how it goes.

I think about the upcoming day a lot and can't help but wonder about this or that, think of the "good", as well as the 'bad", and ultimately all I care about is that my son is ok.  I have heard statistic after statistic, great stories, and bad stories.  I have gotten the pleasure of meeting some personable docs and not so personable ones.  The end result is I'm just looking for a miracle, I'm just looking to whomever it may be to give me and my family the strength to make it through the next few days, then the ones following that.  Day by day, night by night. I look forward to being able to see my son laugh, play, and be on minimal medications....all of these things seem so far away and almost unattainable with the mountain we need to climb first.  We aren't even in the first stage of the race, we are just starting the engine and warming it up.  This battle seems ongoing with no end in sight.

Lots of folks think that this is the "fix", this is the "cure" and once we get past this all is forgotten...I wish I could feel that way but this isn't the case, that's not me being negative but rather realistic.  This is purely the step that is needed to keep another breath in my sons lungs and another day that I have purpose in my own life.  They say tragedy brings and enlightened state of being.  I say ones enlightened state gets them through that very tragedy or dreadful times.

I posted this old image of my son, he was less than a week old in this picture.  We were new parents, proud parents, and by the looks of my hair not quite as stressed (can't believe I had nice dark hair).  I was never given a book on how to deal with being a parent, let alone how to deal with being a parent that needs to support a chronically ill child.  I know I have done lots wrong in my life, lots of mistakes, lots of pain put on others when they never deserved it.  I hope that somewhere, somehow, somebody forgives me for the wrong(s) I have done in my life and just gives my son the chance that he needs.  I just want everything to be ok.  Nobody can guarantee me that, nobody can say for sure me and my sons fate just a few short days from now.  New beginnings? Or new tragedies?  Time dictates all...

-Noah

Today was my pre-op appointment, today was my day to meet with my surgeon and preanesthesia testing.  I was scheduled for 11am for the surgeon visit and 1pm for the anesthesia stuff.  I left my house a little over 2 hrs prior to ensure I got there on time and had time to sign whatever they needed if they needed anything.  When I arrived (which was about 10-15 mins early) I was told the Dr's were running a minimum 30 mins to 1 hr behind.  I decided not to get in a huff about this as this is just how things go (petty often in this place but oh well).  So I told the guy registering me that I would wait outside, as there was no seating and I'm not interested in breathing everyone's sickly cough for the next 30+ mins.  He advised me that if they call my name and I don't hear it I would miss my appointment, so I advised him that I will be outside if they need me and I walked away.  I got fairly irritated, not because they were off schedule but because it was made my problem and in essence tossed back in my face (if I don't do this or that, it will be my fault) and the bottom line is I'm on time and ready for them, they're not, so they are the ones who in my opinion needed to be understanding...and besides, all I was simply doing is stepping outside.  Needless to say about 35-45 mins later they called me back (and yes I was outside that whole time).

I made my way back to be introduced to the adult liver transplant surgeon whom will be doing my operation, his name is Dr. Clark Bonham.  He came off as a relatively young guy (maybe in his early 40's at most).  He asked me if I had any questions and honestly I had a few but nothing too major.  I simply asked how long the operation he thought it would take and expected stay in the hospital.  He said the operation would be anywhere from 4-6 hrs for me and projected stay is 5-10 days.  He went over my risks, a bunch of %'s for this and that.  He advised me on where the scare would be and a little breakdown on how the operation goes.  I felt compelled to drill more questions at him but really didn't have all that much to ask, as it really doesn't matter in the end.  They can tell me this might happen or that might happen and the bottom line is everyone is different; some have great outcomes, some have good outcomes, and others have bad ones.  He told some brief bad ones and it really didn't mean much to me...it just doesn't matter at this point.  He also like everyone else thus far asked me, "You sure you want to do this?", I don't know what it is with this place but its almost like these people all have a script to read off the same jargon.  I can only think its for legal reasons they ask this but its a bit frustrating as well, so rather than answering the question I restated one back to him, I asked, "are you a father Dr?  Do you have any kids of your own?".  I didn't say anymore, I awaited his response.  His response was, "I'm a father of 5......and I would do the same".  Its good to know we are all on the same page, just odd how they keep asking it to me.  Maybe next time I should retort with, "are you asking me if I'm not man enough to follow through with this and instead watch my son suffer and die, take a guess at where I stand on this matter for the 50th time", maybe that would be a better response...maybe I'll save it for next time someone asks me that question.  My appointment was over, it was time for Preanesthesia check-in.

I made my way to the second floor, through some long hallways, past the "Surgery Waiting Area" and the big monitors that show who is in vs. who is out of surgery.  I had a horrible sinking feeling in my stomach, those people I was just looking at will be my wife and family in a just a few days...I got choked up and pretty shaken to be totally honest.  None of this is fair, I hate that she has to go through this (will she be alone?  No, but I won't get to be there to hold her hand, give her a kiss, and just at minimum comfort her). Then of course I pondered my absence as well...WHY, WHY is all this happening, why can't we just be a normal family and have a normal life?  I made my way into this somewhat dark and desolate part of the hospital, it was beyond dreary, cold, and just smelled odd too.  I just realized this is where I check in for surgery in a few days, it all makes sense why it smells/feels the way it does.  I was taken back to a "Preanesthesia" Dr. whom listened to my heart, my lungs, and asked if I was allergic to anything.  He pried into my medical past at bit, asking about my ER trip for Atrial Fibrillation/PVC incident about 9-10 years ago...I began to worry as he mentioned that I might go into A-fib again as I come out of surgery (due to the stress of surgery) and then I just realized, it is what it is, every doctor has said its not life threatening and I assume he would say the same.  He indeed agreed, just reminded me that I may have some complications but not to worry about it and everything should be ok.  That was it and I was done, or so I thought.  He advised me that I needed to do blood work again...So off I went to have more testing done, which was quick and pretty painless; whats another needle poke amongst strangers.  We're all shooting for a common goal, which is set for me to be at this same place on Monday morning at 5:30am.

I can't help but be frustrated with everything, feel sad, and worry about all of this.  Does this mean I think I'm going to die, or Dylan's surgery won't go as planned/hoped?  No, it sure doesn't but when you're stringed around all over the place, told not so great stuff mixed in with it "should" all go well, one has nothing to do but think.......and thinking, and thinking, and thinking some more seems pretty normal to me at this point I would say.  Or am I suppose to be a mindless robot and not listen to my heart, my feelings, my fears?  Should I pretend like I don't need to plan for the worst and hope for the best?  All this stuff is hard and the word hard doesn't accurately describe what's going on in my head at every passing moment (which is ticking away so quickly).  Isn't it only fair that I be true to what is in front of me?  And that what is.....is very real, very scary, and very much permanent either way it ends up going. 
 
-Noah

D-Man has battled his rare congenital birth defect for five years and knows from experience that he doesn't like surgery, especially being put under general anaesthesia.  But on Monday, D-Man, as Dylan Levy, 5, of Rohnert Park is often called, will again enter surgery, this one the most important of his young life, meant to allow him to grow old.

His father Noah, 32, will undergo a simultaneous operation, donating part of his liver to his son for a living donor transplant.

Dylan, who was born without bile ducts in his liver, will be at one end of the Lucille Packard Children's Hospital at Stanford. Noah will be at the other, an already agonizing distance made even worse for Noah by what will be his anaesthesia-induced absence.

“I'm not going to be able to be there,” he said.

At the same time he is grateful.

“I feel very fortunate and blessed to be able to do this for him,” Noah said.

There were 16,108 people on the waiting list for a liver transplant nationwide as of Jan. 28, according to the nonprofit United Network for Organ Sharing, which manages the nation's transplant system under contract to the federal government.

Just 14 pediatric liver transplants were performed in 2009, the last year for which data is available.

On Monday, surgeons will remove 30 to 40 percent of Noah's liver. It will be packed in dry ice and rushed to Dylan's operating room. Surgeons there will remove the blood vessels that feed Dylan's liver, separate it from his abdomen, replace it with Noah's liver, and reconnect the arteries and blood vessels.

The Levy family has known for years this day would come.
“It's real now,” said Dylan's mother, Amber, 28. “We have always known it was going to be an issue but now it's here.”

There is tremendous hope.

“This will make Dylan whole again, this will fix him,” Amber said.

But for each family member fear also surrounds the surgery, which is expected to take six to eight hours.

Dylan asks Amber about the surgery, about “how long he'll be asleep.”

For her part, she said: “It scares the hell out of me, the thought of having my husband and son on the operating table together.”

For Noah, the fear is twofold.

“I'm beyond terrified for him,” he said. “But at the same time I'm really scared that I'm never going to see him again. “I'm not too prideful to admit it, this is absolutely terrifying on my end as well.

“Days from now there is the potential that he's not going to be here, or I may not be here,” Noah said. “It almost feels like a death sentence, just because of the unknown.”

Liver transplant survival rates are relatively high, according to the organ sharing network: For the period 1997 to 2004, the latest for which data is available, 76.6 percent of 1- to 5-year-old patients were alive five years after surgery.

Dylan's condition, biliary atresia, occurs in fewer than 300 babies annually nationwide. It prevents bile from draining from the liver, which leads to cirrhosis, or scarring of the liver tissue. He was diagnosed at six weeks old.

At nine weeks old he was operated on to attach his intestines to his liver, so they could drain the build-up of bile. But already-formed scar tissue continues to block blood flow to his liver.

As a result, on Oct. 21, while he was at home with his mother, a vein in his esophagus burst. He lost half his blood in the hemorrhage. The long-expected transplant became suddenly an urgent necessity.

To add to the family's stress, Amber lost her job as an oral surgeon's assistant because of the time she spent with Dylan in the hospital. They are facing $40,000 in medical bills before the surgery, she said, after which both she and her self-employed husband will be out of work for a recovery period of from eight to 12 weeks.

These days, besides the upcoming transplant, Amber worries that Dylan, who takes 15 medicines a day, will hemorrhage again.

“I don't sleep anymore,” she said. “You worry that in the middle of the night you're going to wake up and he's going to be covered in blood.”

At the end of January, the Levys went to Tahoe, on a trip funded by the Greater Bay Area Make-A-Wish Foundation. Dylan wanted to see fresh snow and on their last day there, more than a foot fell.

The day after they returned, Noah Levy wrote a journal entry on the website the family has set up with information about Dylan and his condition, www.dylanwlevy.com.

“I ask you to think about your loved ones, think how lucky you are; things can always be better or worse in anyone's life but at this moment and this point in time...I can't think of anything much worse than how I feel at this very moment in time,” Noah wrote.

“How is any of this fair to him and to her (Amber)?” he wrote. “I would give anything to make all this go away, even my own life if it meant he could live a more normal one.”

By JEREMY HAY
THE PRESS DEMOCRAT

Original content can be found at: http://www.pressdemocrat.com/article/20110202/ARTICLES/110209875/1350?Title=Father-is-ready-to-help-D-Man

Today Dylan and I were scheduled for our pre-op appointments, first was me at 10:30-12:30, then him at 1:30.  As we made our way down to Stanford Medical Center and Lucile Packard Children Hospital (for those who don't know, LPCH is the pediatric division of Stanford) we received a call about 15 mins away from the hospital telling us that my appointments were being cancelled due to the surgeon being unavailable (he had been called into an adult Liver Transplant), I was pretty bummed out as I've been waiting for this day for sometime, as this is the day we would find out when/where we need to be and how the surgery physically is going to go and its a good time for Q&A as well, which is not something we've gotten to do a lot of).

I had already driven at this point a little over 2 hrs in traffic to be there and to say the least I was a bit upset, understanding of the situation to an extent but none the less fairly annoyed as well.  I know this is a very busy hospital and unlike most Dr's offices or clinics, its a massive transplant center and in addition a center for really ill people (and a fair amount of those being children).  I get it, but what I don't get is this is not the first time that poor communication has taken place and it just got the best of me this AM.  So I continued my way to the Dr's office and felt compelled to voice my thoughts to our transplant coordinator, as its so simple for them to just say "sorry" and move on and make us wait the 3.5 hrs until the next appointment (Dylan's).  I felt bad being a bit rude but I as well feel it was very rude to call me so close to my appointment and more or less say oh well.  If I missed there appointment without 72 hrs advanced notice they charge, so some leeway needs to be understood on their end as well and where I'm coming from with my frustration(s).  Furthermore, I know they knew that the Dr whom I was set to see was not available hours before if not the night before.  The truth of the matter is the Dr. was in a transplant surgery, which they don't just do those at the spur of the moment, meaning they didn't receive that call minutes before and say "cancel all my appointments", I'm willing to bet they got a call late evening or early this AM...its just the two centers have a decent delay on knowing what each is doing.  I felt they needed to accommodate our situation a bit better, I'm not a local to the area and me taking a day off work is a big deal as its just two of us, so I requested if they can move Dylan's appointment up from the 1:30 to sooner...I was informed that they could see him around 12 ish, which was better than the latter, so it was what it was.  My appointments with my surgeon were rescheduled for this Thursday. 

We saw Dylan's transplant surgeon, whom is Dr. Carlos Esquivel MD, PhD and the leading transplant surgeon in the country (if not the world), he is easily the most decorated and sought after authority on pediatric liver transplantation.  We had chatted before so I wasn't expecting anything too new here, just a once over and to see how things are going and going through the motions/protocols (making sure everyone is dotting the i's and crossing the t's).  I was taken back when we got to more in depth stuff and this was good; I don't want things sugar coated and told that everything is peaches and cream (if its not).  I should also add that being in the presence of Dr. E always gives me a very nervous feeling, you know by looking at him that he's a very accomplished and skillful person, furthermore I'm looking to this man to save my son's life...so the feeling is a bit different than anyone else I've ever had dealings with (I'm also not a guy who is star struck or cares about high fluting people, my life is lived very simple for the most part...I'm no different or more special than the next person and I expect that others treat me the same, I really don't have time for the high and mighty's of the world, it just has no relevance in my life), so maybe my feelings of him are purely gratitude that he is the man that holds my son's next breath, I'm not 100% sure to be honest.  I do know that every time I see this man I gain more and more respect for him; today alone when he came in and said hi to us and looked at Dylan, he stopped and observed him for 20-30 secs and didn't say a word, as if he was looking deep into more than what is/was superficial, he has done this on numerous occasions as well.  He looked at Amber and I and said he looks like he has lost a little weight and that his eyes are more sunken in and darker (all signs of his liver disease progressing).  We agreed that he is looking not as healthy as he has in the past, and he has more complaints of being able to swallow again (which is probably his esophageal varix inflamed again, this is also what burst a few months back).  We talked further on the procedure and what not, he also mentioned that Dylan "probably" has a small bleed currently, based on his appearance and lab values.  Amber and I live in fear that Feb. 7th won't come soon enough.  Dr. E even knocked on wood that he makes it to then as well as he is for certain that Dylan has very high pressure in his system and a bleed now could and would most likely be catastrophic.  

I always try to ask Dr's stuff that maybe they won't offer up at first glance but will gladly answer if asked.  I asked about any further complications that are projected with this surgery and how "he" feels Dylan will do.  He mentioned %'s on various things and honestly my mind pretty much started to shut down a bit...an overwhelming feeling took over and really its more than a feeling, its the hard realization that this surgery is not a complete "FIX", its purely a means of survival, without it he will die.  My brain can't even process those words, I know any parent would feel the same but knowing that your kid(s) fate is in the hands of this "hope" that nothing goes wrong and everything goes perfect is not comforting odds; knowing that my son forever lives a harder life than most is a really crummy feeling.  We were told about the incision, the process of removal and transplantation, the intubation period (Dylan will be kept basically in a medically induced coma for min 24-48 hrs afterwards), and that we both will be in the hospital for at min 7-10 days.  I'm so overwhelmed with fear for him and fear for Amber.  I know this all needs to happen, I know there is no other options, I just don't know how my family will get through this.  How will Amber sit bedside and watch the love of her life with a tube down his throat, drains in his sides, multiple IV's, medically induced coma, and a massive wound across one side of his belly to the other...how can anyone mentally prepare for that scenario?  
I ask you to think about your loved ones, think how lucky you are; things can always be better or worse in anyone's life but at this moment and this point in time...I can't think of anything much worse than how I feel at this very moment in time.  How is any of this fair to him and to her?  I would give anything to make all this go away, even my own life if it meant he could live a more normal one.  

-Noah