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.
A Rohnert Park boy will receive a portion of his father's liver Monday
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.”
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.
SATURDAY, JANUARY 22, 2011
Another week down, another week draws closer to the “Day”…Surgery seems so imminent and so surreal at the same time. This day is getting closer and closer, it’s as if time is flying by but at the same time is moving in slow motion as well. I know that doesn’t make a lot of sense but it’s the only way I can explain it. It feels as though there is not enough time in the day to do what I need to do, I still have so much planning to do, and things to work out but then the time feels like it’s moving so slowly and I have all the time I need…then all of a sudden and before I know it, I blink and a week is over and the next draws near.
I was able to accomplish paying 2 months worth of rent today and 2 months of health insurance premiums. I have always had the fear that the little bit I have been able to save over the years wouldn’t be enough in the end. I have stressed over this daily, yearly, and today was my day that I got to face it. I have come to the conclusion that it is what it is. Bills are going to come full force at us and there is no stopping it nor can I do much about it; other than just do the best I can. I have diligently saved every spare penny I had, anytime I got “money” for my birthday, or holiday, or whatever it may be…I have always stuffed it away for these upcoming days. The truth of the matter is, we are like most, and just do what we can to get by. I feel I have done a decent job of doing my best with what I got and my income. The truth is, my sons health care accounts for at min 30-40% of my take home pay, the other 55% is my rent (yes that’s right, we aren’t even homeowners either…and those who know me know I did home mortgages for quite sometime; I just never got sucked into the facade of thinking I can afford something I knew I couldn’t…so we rent, and I don’t care that we do), that typically leaves me with 5% remaining to pay bills…do the math, it doesn’t add up to a whole lot of anything and why we always needed dual incomes to make ends meet. Some months Dylan’s bills were less, others more. I stashed what I could and never looked back.
In the first 3 years of Dylan’s life, when things were really bad and financially stretched, I worked 3 jobs to make ends meet, to ensure we had enough to make certain we never lost Dylan’s insurance. Imagine being a young adult in your early-to-mid 20’s, new baby, and your spending $1,200-$1,500 a month just in insurance for your kids health (well some of you can imagine this because you live/lived it as well), we all know diapers, food, etc…cost a lot as well but we did what we had to do, and we somehow got by. To this day I still pay Dylan’s insurance at min 1 month in advance, as I live in fear of him being dropped by the insurance carrier, so I make sure they never get to use that excuse. For those close to us, you know Amber lost her job back in October when Dylan had his bleed; this has not made anything any easier for us. The term feeling kicked while your down doesn’t accurately express what has been going on over the last few months but I can say through all this financial strain…I have never missed a payment on any of my bills or been late paying them.
I realized today that maybe I didn’t do enough; maybe I have failed as a father, a dad, or maybe I took the wrong career path. As a man we often feel the responsibility for our financial well being is incumbent upon us, today I feel that “strain”, maybe its just a worry, maybe its just me being hard on myself, or maybe it just is what it is and I just need to roll with the punches and worry about this stuff later. Some say why bother worrying about it as there is no changing it, I agree, but life doesn't stand still just because our's does at this moment. There is no changing the path I have walked and there is no good that can come from me stressing about it today.
I was able to step back and realize that 16 days from now is my only real worry, my only true focus, and no amount of money or lack thereof defines the outcome of what lies ahead. Today I ask for the strength to give my family the courage for what lies ahead…
THURSDAY, JANUARY 20, 2011
I am lying here awake. Trying so hard to turn off my thoughts. I find it hard to do anything other then worry about what is happening these next few months. Fear has taken over my life. I know I will not be the one going through surgery. I know to some extent I have it easy, but this will be the hardest thing I have ever done. My heart breaks even thinking about the moment they wheel them away and I am standing there in the hallway alone. I can already feel it. How on earth am I going to do this? Where is the courage going to come from?
WEDNESDAY, JANUARY 19, 2011
Today we got "the call". Not the call that most people get waiting for transplants. We didn't get call in the middle of the night; but the middle of the day. Dylan is scheduled for his transplant. On February 7th my husband will be saving my son's life.
I know that Noah does not feel this way. He says that any man would do this for their child. I don't think that to be true. I feel blessed that I have chosen this man to be my partner in life. I feel that there are moments in life that define us as human beings. These times truly reflect our inner character, that time for Noah is now. Noah is a hero. He is MY hero. He is saving our child. I brought Dylan into this world and we both have poured our hearts and souls into him, but Noah is keeping our little boy alive.
I really don't know how I feel about all of this. I will have the man of my dreams and my little boy in the OR at the same time. I can't even begin to explain the fear involved with this. My whole world will stand still for that time, but I know Dylan needs this. It will be hard but I know I will get through this. We all will. We are blessed to have a family like we do. They expressed such great support and love. We are also blessed to have such supportive friends. I can not thank everyone enough for what they have done for us. It is overwhelming to see the love that everyone has for our child.
Today we went to Stanford. Noah has to bank his own blood for the surgery. They need two pints, which have to be drawn a week apart. We will go back next week as well. We also had some more labs drawn on Dylan. It is amazing how good he is at it. No tears; such a brave boy. We will meet with the surgeons the week before to iron out all the details so we know exactly what we need to do before.
For the past week and a half Dylan has been fighting a terrible infection. We are not sure what it was exactly but the doctor said it was most likely RSV (Respiratory Syncytial Virus). Any infection like this is terrible for Dylan. Due to his large spleen he has a weakened immune system because all of his white blood cells that would normally fight the infections are trapped in his spleen. We have done endless breathing treatments. He is using Albuterol and an inhaled steroid, Pulmicort. His doctor also placed him on a three day burst of prednisone. He felt that Dylan’s lungs were having a really hard time getting any air in and needed a little extra help. As if all of this was not enough Dylan was also place on a 10 day course of antibiotics. We have to do this with any fever Dylan gets. It has always been our protocol due to his liver disease. In the mean time we are trying to get Dylan healthy again. This infection has done a number on our little man. His cough in still nasty and wet so we are adding mucinex to the medication list to get it all out. The good news is we are fever free and wheeze free now. Dylan will be pulled out of school for the remainder of the year. With everything that has happened and our surgery actually scheduled now there is no reason to risk new infection before then. Bottom line is his health comes WAY before his ABC's. We will start independent study program afterward to keep him up to speed so he will stay on task and keep up with his friends for the next school year.
On a bright side we are going on a trip. There is an organization that grants wishes for children with life threatening illnesses, the Make-a-Wish foundation. We contacted them a few months back to see if we could have Dylan’s wish granted before his transplant. It only took a couple of weeks for them to contact us and to meet with our wish grantors (the make-a-wish volunteers). Dylan told them that it is his wish to see the snow. He told them he wants to make a snowman, eat a snowflake, and have a snowball fight. Dylan has never been to the snow. He has never seen snow. In fact, our family has never been away for any type of vacation. We have always been leery of traveling with Dylan due to the “what ifs”. The thought of traveling even now is hard for me, but I know we will have a great time and we deserve a little mental break from our day to day. We will be going to Tahoe for 5 days and 4 nights. That is all we know for now. Everything is kept secret and a surprise until the wish grantors reveal it to us. We are beyond thrilled. This will create such wonderful lasting memories for all of us.
Please continue to pray for us during this challenging time. We truly appreciate all the journal entries as well. We will keep this site up to date as much as we can. Thanks again for all the support.
FRIDAY, JANUARY 14, 2011
Today is a day that I believe will forever live in my memory; today we received word that I’ve been accepted for Living Related Donation to my son. I have been holding onto this “hope” as well as “fear” for so many years now; it comes with a sense of relief knowing I’m 100% approved for this operation in the near future and on the flip side of course a bit of pressure and uncertainty. I want what is best for Dylan and I hope giving a piece of me works out for him in the long run. As many know, organ donation is not a “Guarantee”. Its not a stamp that says all will go smoothly, that nothing will go wrong, and/or that things will work out for the better. The only guarantee in this process is that Dylan must undergo these steps, that if there is no drastic medical intervention him and others in his same predicament only have one for sure outcome. My mind simply cannot go down that path, I don’t accept those odds, I don’t know what would happen if this didn’t work out, my mind is only fixated on the process of what I need to do in order to give him the best case scenario for his future at this moment in time.
“HOPE” is the belief in a positive outcome related to events and circumstances in one's life. Not to be confused with positive thinking, which refers to a therapeutic or systematic process.
“FEAR” is a distressing emotion aroused by a perceived threat. It is a basic survival mechanism occurring in response to a specific stimulus, such as pain or threat of danger.
I know one will have read this far and think, “Why is he complaining, I thought all he wanted was to be a donor and now he is and isn’t happy with that?”
My response is: that’s so far from what the those terms of Hope/Fear are and that me feeling both is very real and very much warranted on my end (so I think). I like anyone else just want what is best for their family. I like everyone else am only human and going through my motions the best I know how. Having now passed the initial 50/50 split between Hope/Fear phases; I feel it’s very normal that the balance is shifting…a bit less hope and more fear now. Fear of the unknown, fear of “what if’s”, fear of how real everything just now became and on a totally different level. I don’t believe this makes me a weak minded person, I think that it’s imperative that I continue to fight the fight, that I continue to push my mind on a path that I have no reference to reflect back on (which makes it harder), that I do what is proper and work through my emotions as there is no right or wrong.
Fears I have: What if my liver doesn’t work out? What if he has to undergo this procedure in the near future b/c things don’t go as we “hope” them to go? What if he doesn’t do as well as we “hope” he will? The other real fear is how does one prepare for this and even more so how does one explain this to there kid?
When Dylan was having his endoscopies he was out of his mind scared (and rightfully so), I have never cried so much in my own life as when I watched and reflected back on how scared he was when they give him the versed, as he knows what’s to come thereafter…even though it alters your memory and he will likely forget most of it. The whole thing just down right sucks, I wish I could take all this away from him and trade spots with him. NO kid should have to go through what he goes through.
As I mentioned to a family member the other day:
“All to often we forget how powerful a simple gesture or giving 5 mins of our time can be. I thank you for taking that time as I know everyone’s lives are busy and we all have our own issues to deal with in life.
Thanks for keeping up to date on Dylan. In my younger years I never would of even paid any notice to folks talking about praying or keeping Dylan in there thoughts, through all this faith has for sure played a role. Faith in our loved ones, as well as looking towards another power, being, or whatever works for that person is important...I'm not a religious person but I do believe whatever you believe in and prayers to can help, as it for sure can't hurt any.”
Although it could always be better or worse , that’s not our life…our life is the present and what’s right in front of us. The Hope is all goes well, the fear is that we lose our hope. We need every ounce of support we can get and just knowing that folks care for us and are willing to help our family is a real blessing. As stated above, thank you to all our family/friends and perfect strangers for your support…it does help us.
WEDNESDAY, JANUARY 12, 2011
This week has already almost come and gone...
On Monday I had an appointment with a Independent Donor Advocate, Social Worker, and Transplant Hepatologist. The day went pretty much as expected (which I wasn't expecting too much).
The Donor Advocate was very nice, although I'm not quite sure her role, needless to say she was nice to chat with for a little bit. She also tossed on me some pictures of "Living Donor's" surgery incisions and drains...nothing too gruesome but I guess to put a face to my potential reality here in the future. I wasn't all that concerned to be honest, it is what it is.
The Social Worker was also very nice, soft spoken lady, whom I guess is there to help me through pretty much whatever. Yet again, not to sure of her role either as I don't have any insurance so I don't foresee any battles she will need to fight. She did inform me that while I'm in hospital I should be able to collect disability (why not, I've paid into it...might as well use it in a time of need). She also had a slew of questions for me, basically going over all my whole history. From how my childhood was to what drugs I've done and everything in between. I myself have filled out this similar questionnaire a few times now. Just another item on the list they need to check off I suppose.
I moved onto my Hepatology appointment, this appointment I was extremely nervous for, as I assumed he was going to tell me if anything was wrong with my anatomy and/or if I was approved to donate. Needless to say, I got no such answers from this appointment. The Dr. was really nice, very personable to be honest...I believe he sensed my disappointment when he told me he had none of my test results in "his" computer system, but this was only after he was asking when I was due to do my testing from which I already had done weeks ago...long and short the left hand was not seeing eye-to-eye with the right hand. It was bound to happen again, as disappointed I am/was that day, its to be expected as I have yet to see any hospital let alone a center the masses of Stanford not have issues with everyone being on the same page. The Dr. was encouraging and said he could see that I was not interested in hearing the "bad" things that could come of me going into this operation, as he realized its for my son and I would do anything to make him better. Was really a breath of fresh air, just him being personal with me and ultimately understanding where I was coming from really excused the other stuff and I left somewhat disappointed but not entirely, I really appreciated his candor.
Today was my Psychiatry appointment, yet another item on the list of things that make living donation proper? This is the one that probably irks me the most. I really don't see how/why this is necessary...the bottom line is this is about science, I have willinglyvolunteered my organ for my son. As long as the chemistry checks out, labs are good, and it will work properly there is really no need to determine my mental state. The truth of the matter is, this is stressful and anyone who states otherwise is well probably the one in need of the psychiatry appointment. The mental state of anyone like me in my shoes is not 100% sensible at the moment but does this make us a mental liability? I'm sure plenty of folks go to these people and blow all sorts of smoke up the Dr.'s you know what and to be real about it I thought about it and realized there is no reason for it, I just need to be who I am...after all, there is no reason to be otherwise.
I was asked a whole slew of more questions and even more about my personal life, my behaviors in the past, if I had used drugs, If I had ever been depressed, and if I'm mentally ready/prepared for whats to come. Sticking to what I know I explained in detail about every question that was asked...I have nothing to hide and I actually find this amusing b/c it really has no bearing on anything to do with knowing that I'm a suitable donor for my son. Isn't this about saving my son's life? Why do I need to talk about why I was depressed when I was 18 over a girlfriend whom broke my heart? Is this really an ideal way of spending ones time and insurances money? I just don't get it, why do I have to pass some sort of personality test in order to be fit to have surgery? I explained myself and my actions as a kid, young adult, and reiterated that nothing anyone can say or do would make me feel otherwise about this OPPORTUNITY to help save my son's life right now.
I can't help but feel emotionally drained by the process. Thus far I have gone to 3 appointments on 3 different days, totaling 18+ hrs of time, 600+ miles of driving, and I still have no answers on "IF" I'm suitable to be a donor. This is the most frustrating part about all this. The shear amount of different folks involved I'm sure makes for a nightmare of getting everyone on the same page but I just don't think anyone on the other side thinks about what I go through, how hard it is for someone like me to be holding onto this "HOPE" and I just wish they would realize that its all we have and if they could be more organized, more communicative, we the "potential donors" would be a lot better off and could finally relax a bit and somewhat be at peace with what is next to come.
I'm ready for this phase to be over, I will drive as many hours as needed, travel as many miles are necessary, and will jump through whatever hurdles they put in front of me...I just want to know that I get the privilege to attempt to save my son's life. Time is running out and patience is running thin, they don't owe me anything but they owe my son a better life and I'm right here waiting/willing to give mine for him.
But instead we sit here and wait...
SATURDAY, JANUARY 8, 2011
It has been just about 2 weeks since I had a slew of testing done to prepare for the next step. These tests included a MRI w/ contrast (to look at volumetric flow of the liver), EKG, Chest X-Ray, and Lab tests (literally enough blood to almost pass out).
The next phase is happening this upcoming week. I go back for review with the adult Hepatologist, Psychiatrist, Social Worker, and a Independent Living Donor Advocate. Dr. Esquivel (Dylan's transplant surgeon) will also be reviewing all of my work-up with the team and making the final decision on if I'm officially suitable for living donation and can undergo surgery myself.
Another item that is happening while I/Lucile Packard go through the motions is Dylan's Pediatric End Stage Liver Disease (PELD) Score adjustment. The transplant team is going back to UNOS (United Network of Organ Sharing) and asking for exception points on behalf of Dylan. The reason for this is because of how the score is calculated and how it determines individuals scores is not always so cut and dry. The score is based on 5 criteria's:
Age, Weight, Bilirubin, INR, and Albumin
What it doesn't account for is all the "other" side effects that comes with liver disease. This is why Dylan's current PELD score is a -8 (40 being the highest and most urgent based on this system). At first glance one would think that Dylan is not in danger based on his current scoring but if you ask his physicians he's in more critical danger than some of the others whom have higher scores. This is because once you have a bleed, you're more likely to have another, which is why Dylan underwent so many endoscopies for banding of his esophageal varix. Like everything else in life as you fix one thing it can affect another and this held true for this scenario. In order to ensure Dylan had no more bleeds he had to have this banding done but in doing so it adds more pressure down lower, which has added to his cardiac (stomach) varcies; we even questioned it at the time but protocol and survival warrants the need to continue. Now that Dylan has cardiac varcies, which he now has 3 of them, he is in extreme danger of a life threatening bleed. In the doctors own words, "if he was to have a varix bleed in his stomach, we fear we wouldn't be able to stop it in time" and in explaining this detail it was added that just a few weeks ago a child in fact died from that exact circumstance. This is why Dylan case is going back and being presented to UNOS for those exception points as his current score is not reflective of his current state of health. The team informed us that they are asking for Dylan to be listed at a PELD score of 35.
In the meantime I continue to push forward with them to complete my work-up ASAP and getting a date set for our surgeries (thus far it sounds like its going to be mid February). I understand why they wish to do these exception points b/c they don't care to risk 2 lives if they don't have to and if in the rare instance a deceased donor came available during this "check/balance" time, they would take it.
Over the last few weeks I've had a lot of up's/down's and at times its extremely overwhelming, some say "try not to think about it", "relax", "stop stressing"...my only response is: try not to think about the fear you know your kid is going to feel and asks about daily, try not to think about the pain he will be in and how he won't be the same kid for a while, try not to feel what we already know and what we don't know is to come. How can I stop those feelings? How am I suppose to just bury my head in the sand and pretend its not real....SIMPLE I can't, as that's not my life and that's not our scenario.
I just want to move forward with our son's health, even at the risk of my own (no different than how any parent would be). As unprepared physically, financially, and all our items being in order are....I'm mentally ready today, ready for whatever lies ahead and whatever obstacles are going to arise in our paths. My only care at this moment, at this place in time is the health of my family and seeing to it my son has everything every other kid has; and that's just for once to be allowed to be a kid.
Thank you for all your continued support of our family during this rough time.
The Journal section of the site will be kept up to date with Amber and Noah's thoughts, feelings, and of course hopes...Thanks for taking the time to read and please feel free to comment.