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.