Today was a packed schedule, we had Lab draw at 7:30am, Pathology (viewing of Dylan's old liver) at 1:30pm, and liver clinic at 2pm.  

We slept pretty bad, literally only a few hrs again.  Dylan has been getting up non stop to go to the bathroom and to say the least we are extremely beat down and exhausted at this point.

We made it to the lab right on time but it wasn't without hiccups.  Amber had put Dylan's numbing cream on both the inner elbow creases and on his left hand but all his veins are still blown out and just destroyed at this point.  The only spot they could use was the top of Dylan's right hand.  Needless to say he was disappointed with this b/c he knew it was going to hurt a bit but he made it through it. We made our way back to the house b/c Dylan's going to the toilet every 20-30 mins non-stop.


We headed back to the hospital and were excited to go to Pathology to view Dylan's old liver.  I know some think, why would we wish to do this and my only answer is...I feel in order for us to move forward with our lives we need to come to terms with the past and truly understand (in a physical sense) what was going on inside of Dylan's body.  We had arrived and it was really interesting to say the least once we got a chance to view it.  The liver at first sight was VERY large, I was expecting something so much smaller.  The appearance of it was very grey (not all pics represent this but it was very grey colored), very hard, and nodular.  The texture was not smooth like livers are suppose to be and was more of a stucco feeling, very much like a meatloaf (which is not how it should be, livers should be smooth and elongated).  Upon looking at it closely you could visually see the bad sections of his liver.  If you notice the sections that show the liver split in half you can see the inner 20% or so is pinkish colored and the outer is very grey/brown looking (which is scar tissue aka cirrhosis).  We spoke to the Pathologist and asked if he had noticed anything out of the "norm", aside from the obvious, and he mentioned that the vascular structure under microscope was not developed completely, which makes sense as to why Dylan had such high pressure in his system (causing the varicies and bleed) and as the liver got sicker (more cirrhotic) that these issues became more prevalent.  It was very interesting to say the least and I feel it was a good thing for us to view and bring some sort of closure to the past 5.5 years of our lives.

Dylan's clinic visit was very typical for the most part.  We got Dylan's labs back and everything is still trending downwards, with exception of Dylan's Bilirubin has jumped up 3x what it was 2 days ago.  The docs are not overly concerned at this moment but do wish to watch Dylan even more closely now.  Their is a few reasons this could be happening, 1- removal of the bile bag, 2- swelling inside his bile duct, 3- infection.  As of this moment they are going to up his Prograf (anti-rejection) medicine and watch for Dylan's labs on Monday and see what happens, we know his liver is doing well but the bilirubin is of concern and needs to trend downwards, otherwise they will intervene on Monday next week.

-Noah

                                        ***WARNING- IMAGES ARE OF GRAPHIC NATURE***

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***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge.  To get more images put your cursor over the last picture shown on the right, it will scroll to more images***

On Monday Dylan had his scheduled labs done and later that day we had clinic.  Dylan's lab were great, everything is trending down and thats exactly what we wish to see.  Dylan got his Bile bag and some stitches removed from a drain hole in his side.  The catheter tube going to his biliary tree is still in place and will remain in place up to a few more months (this just has a cap on it and stays taped to his body).  Dylan felt so much better having this bag removed, he was very self conscience and felt everyone was starring at him and the bag.  I'm happy it was removed for his sake, from a medical standpoint it was time b/c it wasn't catching anymore bile, so there was no need for it anymore.  The whole scenario didn't go without waterworks from Dylan though; I feel so bad, he's been so traumatized that he thinks everyone in a white lab/dr coat is going to hurt him.  He really lost it when they went to do these very simple procedures to him, literally screaming that he wanted everyone to "wait" and not do anymore stuff to him.  He had himself so worked up that he was making himself sick.

We awoke at 4am to Dylan having explosive diarrhea, couldn't even make it to the toilet in time.  He had more diarrhea throughout the day and we got really worried about it.  We called the transplant team and their advice was to monitor it and let them know if anything changed or got worse.  Dylan throughout mid morning seemed pretty good.  We decided we could make the decently long trek to my work so I could catch up on things and just attempt to not come into a nightmare if I was to come back full time in a week (not saying Adam or anyone isn't doing there job but paperwork never ends at a busy automotive shop and its getting towards end of month and bills are coming due again).  So we spent the day at LIC Motorsports, my work, and I was able to get a lot of stuff done.  I was fairly frustrated with myself and a lot of other things throughout the day but it was what it was and I just did the best I could with what was in front of me.  Adam has been doing a good job keeping things going and doing all aspects of our business (which I knew he could do and I never questioned that, just its a bit much for one person to do).  At around 5:45pm thats when things changed.

Dylan had explosive diarrhea again and this time it was not normal looking, it was very pale and mucous looking...anyone who knows liver disease knows both of those combinations aren't good to see, especially 2 weeks post transplant.  So we got on the phone with the GI fellow on-call, at the same time we started our long drive back towards our temporary home and Stanford Medical Hospital.  The fellow didn't seem too concerned and said they would call back when they had a chance to review Dylan's chart in more detail.  Amber and I have been our son's biggest advocate and if we haven't pushed so hard to do as such, I'm confident Dylan would of been in danger a long time ago...I credit Amber's motherly intuition for Dylan making it as far/long as he has, so we weren't questioning the fellow but we also knew we couldn't just go 14-16hrs and not "know" if things were ok or not.  We arrived at the ER about 1.5hrs from the time we left and were promptly put into a room and Dylan was setup with an IV and labs were drawn.  They ran a battery of tests, CBC, Complete Metabolic Panel (Liver function Tests), Stool Sample (to test for C-Diff, Influenza, Roto Virus), and Chemistry Test (Hydration Test).  We were in the ER for a long time, we got results about 1am and were released shortly thereafter.  None of the tests were of concern, which is good but at the same time we don't know what is causing Dylan's really bad diarrhea.  None the less, knowing for sure that Dylan's liver is ok was paramount and I feel we did the right thing (so do the docs and transplant team).  Dylan is such a trooper but I feel so bad for how he feels at times, he said "he was sorry that we had to go to the hospital again" and "if he was going to be in trouble"...UGH, this stuff is so unfair, how can he feel that way, and better yet...how can we make him feel better about it?  We do everything we can to let him know that  NONE of this is his fault but he takes it hard at times and of course so do we.

We called the Transplant Team today to advise them of our trip to the ER.  They agreed we did the right thing and said they feel Dylan might have inflammation of his colon (Colitis), as he still has diarrhea and its now looking a little  bloody.  We have another appointment tomorrow for labs and clinic visit, so hoping to find out more and hoping that Dylan's liver labs continuing on there trend downwards.

I learned a few things over the course of the last few days.  That the docs know what they're talking about when they say you MUST stay close to the hospital, there are so many reasons for this and clearly last night was one of them.  I felt so guilty for bringing my family to the Northbay only to have to stress out and drive like a madman to get to the Southbay in rush hour traffic.  I myself also felt very stressed while at work, I took easily 20 plus phone calls and just dove head first back into work, meanwhile I ended up doubled over in pain later on, which I attribute to the stress levels I was at yesterday.  Its hard not to do things, I am a person who has worked my whole life and often times spending 6 days a week and 12 hours per day doing it.  I'm not to proud to sit it out, I just don't want to let anyone down.  I feel so grateful for what everyone has done for us and I don't want to wear out my welcome with my living accommodations, my friends whom are watching our dogs, and my brother who is left to fend for himself at our place of business.  Just typing this is stressing me out...

I just want what is best for EVERYONE, I'm doing my best to wear every hat possible...and I feel like I'm doing a crummy job doing each and every one of them.

Tomorrow is a new day and an interesting one at that...we have requested to see Dylan's old liver and tomorrow is the day we get to view it (I feel this will be a good closure for us and what we've all battled for the last 5.5 years of our lives.  Expect a update with pics tomorrow), I hope Dylan gets relief from his backside soon, and I hope his liver continues to be happy.

-Noah

The weekend has come to a end and another stressful week of Hospital trips is upon us.

We were able to make a day trip today to the local Stanford Shopping Center and just attempted to be normal and feel human again.  The sun finally came out and was shinning intermittently throughout the day (over the last 5 days its been dumping rain in this area), but it was still nice to get out and look around at things for Amber...she has been running low on clothes and it was nice to get a few things to make her feel like a pretty women again, which if you ask me is good for mental health and she deserves it after all she has done and been through over the course of the last few weeks and honestly years.  I went looking for and found a dragonfly pendant necklace (it was our 6 year anniversary while we were in the hospital last week).  For those who don't know, dragonflies are suppose to represent healing and new beginnings...so I thought it was very fitting and it looked very pretty on her, she seemed to love the surprise (we never buy gifts for each other, so it was a nice unexpected treat on her end).  Amber has truly sacrificed everything for Dylan.  I wish there was more I could do for her to show her how much I appreciate what she does and has done to get Dylan to where he is.  She is an amazing person and I'm so lucky to call her my wife, mother to Dylan, and my best friend.  Even though it was a better day, I keep getting overwhelmed with anxiety and stress.

I can't help but feel very stressed at this moment.  I have been worried about my place of business since all this even became reality and the thought of me not being there is really hard.  I have spent the better part of 7+ years helping build our company to what it is (LIC Motorsports), not that its anything special but its both me and my brother's lively-hood and I have invested so much time and energy into it...I just can't say 100% my mind is ready for work mode.  I feel like this is the issue with most self-employed business owners; you become tied to your work.  I know over the years I have sacraficed a lot to get our business to where I wanted it and being away for these last 2 weeks has been very challenging to say the least.  I know my brother can handle it but I have dedicated so much personal time that I feel I deserve the break that I need to be with my family but at the same time, I can't be away any longer than what is needed.  I really feel like I'm in a awkward predicament and I don't want to let down my brother or my family during this time.  Onto another stressor.

One of the more stressful things about having dealt with a child that has liver disease over the years is the constant "unknown".  This unknown has kept me up very late at night, made me physically ill, and more often than not will dictate ill feelings for the scary/unknown future and what it may hold.  Now most will say, "live it day by day", "live in the now only", "don't stress about the things you can't control".  I hear all these often and there is nothing wrong with saying them but that's really where it ends....try living them; its a very different thing to do and is very hard to say the least on my end.

We have contemplated that if all goes well this week that we would move back to our residence and make the trek back and forth to here 2x a week.  The more and more we think about it, the more and more I realize that its not going to work out.  I don't think its fair to have my wife and kid get up at 4am 2x a week (and that's under best case scenario, if his labs are not ideal one day...you come back daily until its back under control and/or stable).  I'm eager to get back to our lives under our own roof but being next to the hospital seems very critical as well, after all it's why they say a min 6-12 weeks living near the facility.  Really not sure what to do right now, I'm not trying to make this harder on anyone, albeit my brother or my wife/kid.  Just always seems like I'm forced to make decisions that aren't the most comfortable.

Its now past 2am in the morning and my insomnia is about as bad as I've ever had it...not sure what else I can do but think, type, and attempt to just do my best.  I'm stressed for labs tomorrow AM but hopeful that everything is still on track.  Until tomorrow, which I hope is uneventful

-Noah

So I've had a fairly hard time sleeping, well in all honesty I would say pretty severe insomnia to be exact.  I feel like I try my best to get to bed early and "attempt" to sleep but I just can't stop thinking about things.  I've been prescribed sleeping pills but have yet to take any.  I'm so grateful we are where we are but I don't think the severity of what we just went through has hit me.

I was advised to go to a therapist yesterday (I guess this is just part of the process).  My visit was really good, Dr. Jose Maldonado was very personable and not like most "shrinks", he was just there to listen, hear if I had any concerns and that was that.  He didn't judge me, or tell me that what we are doing/feeling is wrong.  He also mentioned to me that he felt what I did was a very courageous thing...which I quickly brushed off.

I have lots of people who say things to me.  A perfect example is I had my post-surgery appointment yesterday as well, this was with Dr. Waldo Concepcion and this man is really amazing.  Not only did he do the doctorly thing to do; check/clean my incision and advise me NOT to return to work for a minimum 6 weeks; he took it a step further.  He spent 99% of his time explaining to me how what I just did for my son was a very selfless thing and that "I saved his life and the life of another", I said to him, what do you mean.  He replied, "By you giving your liver to your son, you have saved his life, and by being a living related donor I have allowed another child to acquire that liver that Dylan would of needed from a deceased donor and that it was a heroic act that I did".

I explained to Dr. Concepcion that I do NOT feel that way and that I didn't do anything special, I'm just doing my part as a father/dad.  I honestly don't feel like I have done anything, I simply laid on a table for these amazing people to do what they needed to do to save my son's life, NOT me.  I understand that its scary what I went through, mentally and physically...I know I will be in pain for quite sometime to come and I know mentally that this whole thing will take a bit to get over, but it is what it is.  The end goal is one common one, TO ENSURE MY SON'S SURVIVAL AND GIVE HIM THE BEST CHANCE AT LIFE.  Nothing more, nothing less.  I have done nothing different than any parent in my shoes would do.  I just don't see this thinking, nor can I wrap my head around it.  Even Amber says the same things to me, she feels like Dr. Concepcion and I strongly disagree.  We (Amber and I) I have never viewed Dylan's hurdles, condition, or stresses that one will have as a nuisance but rather a gift; a challenging one but none-the-less a gift that we were chosen for.

I can't help but wonder, think about, and be curious of what the future holds for my family and especially Dylan's progress.  We have spent the last 5.5 years being loving parents and caregivers to our child, maybe sometimes more a caregiver than a parent but none the less I feel Amber and I have done a decent, if not fantastic job of getting Dylan to this point.  I wonder if this is the continued process of just keeping one going or do we get to relax a tad and finally get to let Dylan be a "normal" child and let him do the "normal" things of just being a kid.  I think until the medicine regime reduces this will be a hard one, as of this moment his dosage and interval is insane; very time consuming and tedious.  I as well take a decent amount of meds b/c of all this, aside from pain pills I take about half dozen meds and have to give myself injections daily for the next 6+ weeks, so I can somewhat relate to Dylan right now on that level as well.

I do look forward to a day (if this happens) when we look back on all this and it feels like a little road block in our lives.  I know Dylan is where he is b/c of Amber and the unbelievable care she has sacrificed and given him throughout his life.

Where do we go from here?  I imagine ONLY time will tell...

-Noah

The day started with me arriving early to the hospital, as I didn't want to miss the Dr's doing there rounds, and more importantly what they had to say in regards to Dylan's labs.  I relieved Amber so she could get a mental break, she was able to take a much needed/wanted shower and head to the cafeteria for some food for us.  The emotional stress of the last few days had really taken a toll on us, literally from extreme highs to the lowest low's...and that doesn't really do it justice explaining it like that.  I often times make sure I don't dive too deep into our inner feelings, as I don't care to upset or make others feel badly.  I can say that this "experience" is one that has been beyond overwhelming and very mentally and obviously physically challenging.

The Doc's popped into the room and said, "Dylan are you ready to go home today?", he was like "yeaaaaaaah".  They agreed and told us his labs had come back down and stabilized enough to satisfy there criteria to continue this journey out of the hospital setting and if we were ready we can start to pack up.  Amber and I were so relieved and honestly scared at the same time.  It had only been 8 days and our transplant hospital stay had come to an end but this process was far from over.  Part of being able to check out of the hospital is showing the team that we as Dylan's parents are fully prepped to continue his care and medicine regime.  Amber was sent off to Redwood City (about a 15-20 min drive) to go fetch Dylan's many meds from Kaiser, did I say many?  I should reword that as a truck load of meds.  It is unreal what is needed to keep things going, literally its a full time job of keeping track of when, where, and what is due.  Amber finally made her way back to the hospital and showed the team all the proper meds and we were officially free to go.

As we headed down stairs and into the car, it was an amazing feeling...we had spent 5+ years in anticipation of these last week's events and it was coming to an end.  We rolled down our windows and took in the fresh air, turned on the stereo and "Train - Drops of Jupiter" was playing in my car, Dylan started to sing (for those who don't know, he has an amazing voice and a knack for hearing/learning songs) and I was succumbed to emotions.  I can't believe we had already come/gone through our hospital stay and our second phase of life was about to embark...

We made our way to our temporary living arrangements and it felt so good to just be together as a family again.  Things were very different but just being in each others arms, air space, and same central location really felt good.  Amazing how just a few short days ago we were hearing terms of "status 1A", "liver transplant #2", and here we were 48hrs later having dinner together...simply beautiful is what it was.  The night was finished off with attempting to head to bed early, as we had to be back at the hospital by 7:30am.  Dylan will have follow-up appointments and lab draws nearly daily for the next few months.

We headed to the hospital bright and early...ONLY to forget the standing order lab slip, ugh, what a pain.  Amber headed back to grab it and quickly rush back for Dylan's lab draw.  Eventually all worked out and Dylan had his needle stick for the day, which by the way he is not too happy about.  This whole process has really made him very angry, not trusting of others, and unsure of what people's intentions are.  Rightfully so, he has been through a lot thats for sure.  

We decided to make our way to Target and get some stuff for daily living and make our place a bit more comfortable and more like "home" feeling.  We quickly realized that our lives are going to be far from normal.  Dylan is just so agitated and uncomfortable, he also doesn't like that he has to wear a mask in public and have a bile bag (this is very similar to a colostomy bag and is worn on his hip, its attached to his biliary tree to visually see bile color/flow), this will be removed in a few weeks and the line will stay in for up to 3 months.  Dylan's meds are also very tedious and very often.  We are accustom to Dylan taking a lot of meds but we had our old routine down and this new one is just a bit different so we have a learning curve to overcome.  Furthermore, Dylan is not wanting to take his meds and it just breaks my heart that its yet another item that he has no control over and he MUST take on time every time.  We found ourselves in the parking lot, in the rain, with Dylan having a break down and Amber trying to tell him why he must take his meds at that moment and to stop fighting her about it.  For me it was just too much, I started to cry and just got really upset...I just want him better and I know this process is essential for him to do well in the future.

Dylan is currently taking about 20-25 doses of meds per day right now, the anti-rejection alone has very strict guidelines around it, which is no food/drink 1 hr before and no food/drink 1 hr after.  I know there is light at the end of the tunnel but it seems so far away.  In about a month's time he will have about 5 doses removed, in another 3 months time a few more.  In about 1 years time the goal is for only 2 meds.  2-3 years out the hope is he is only on the anti-rejection meds and ideally a very low dose.  The fine balance between our care for Dylan and how we give these meds and the medical teams ability to balance these drugs will determine Dylan's future.  It's such a long and tough road in front of us, all I can think of is the present but I dream of Dylan's future...it brings a lump to my throat each and every time.

Please keep Dylan in your thoughts, this road we have traveled down has just begun.

*We receive all your comments and contact (email) entries, please know we take each and every one of these to heart.  We will be responding to the hundreds of emails over the course of the next week or so.  We have not forgotten about any of you and you will hear from us real soon, we just needed a little time for things to settle down before we can respond to every individual person who has taken the time to send us an email.

-Noah

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***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge.  To get more images put your cursor over the last picture shown on the right, it will scroll to more images***

We apologize for the lack of updates, these are really stressful times and honestly finding a computer, let alone the time to gather thoughts is a challenging thing at this moment.  Over the last 48hrs a lot has transpired.

I got discharged from the hospital on Saturday morning and was some what relieved to get back to a normal house setting and maybe recoup better there, no offense against the hospital but lets be real...its not a hotel (the constant in/out of nurses, meds, vital checks, and just not being in your own bed is never easy).  The core of the issue is, I can't relax without my family.  I did attempt to take it a bit easy the rest of the day on Saturday and then come back to see Amber and Dylan on Sunday.  I found myself not being able to really eat, relax, or manage my overall pain all that well.  Even with the great support  from other family, its just not the same...and I missed my family terribly.

On Sunday (Yesterday), I headed to the hospital early to spend the day with Amber and D-man, it has been darn near a week since I had seen them for more than 5 mins, which in short was beyond unbearable to say the least.  We planned for what was to come, had executed it well but it became way more than I honestly thought it would be.  I never went into this with any preconceived notions that it would go one way or the other, I just knew we would do what we could to get through this time and make sure Dylan could have the best outcome. 

I arrived here early yesterday (around 10am), hung out and was enjoying us being a family again, it was really nice to be together.  Within the hour of being here, we got Dylan's lab results; the results showed that his AST, ALT, and a few select other liver functions had raised (as opposed to dropping, which is what is suppose to happen).  This alarmed the transplant staff, whom was very honest about everything and kept us informed of there concerns.  There could be many reasons as to why this was happening and they wanted to rule out a major one, which was that the Hepatic Artery was still flowing (during the first 7 days they worry about this artery clotting off and losing blood supply), so they called in the ultrasound tech to locate the artery.  The tech spent in upwards of 45 mins trying to find his arteries, I say arteries b/c when they transplanted my liver into Dylan, my liver had 2 of them (which apparently is EXTREMELY rare), Dylan's surgeon even mentioned this and said that he was possibly going to not hook it up but said there would be no harm in doing so (extra blood supply couldn't hurt that's for sure).  After all this time of looking and no success, the situation was getting very scary, we could see it on the tech's face (whom had been able to find it every other time he looked for it) and the transplant teams worries became more of an immediate plan of action.  We were told that Dylan would need to have a CT Scan to locate these arteries and see if they're still working, they would inject dye into his central line and take a scan to see if it has flow.  If it didnt have flow Dylan would be re-listed as status 1A = #1 on the national transplant waiting list and would be next inline for an immediate transplant.....again.  This was a thought that no words can explain and I have none to explain it now.

We were whisked off to CT, both Amber and I would be in the room holding Dylan's hands to keep him still and feeling safe.  We had a direct line view to the observation booth where they perform/review the scans.  We feel so blessed that my transplant surgeon was the on call liver doc for the week, as well as one of Dylan's other surgeons that was in his surgery, so familiar faces were present.  I couldn't help but look at these folks and there expressions to gauge what was going on while they were reading the images.  I could visibly see that things weren't looking good.  As you can imagine we held hope for the best, we were prepped for the worst, and the entire situation was so surreal, so unbelievable, and so scary to think that our son could go into immediate liver failure and face this whole process all over again.  I had such feelings of hopelessness, emptiness, and that the one gift I could give (myself/liver) and even that wasn't good enough.  The surgeons came out and said that the left artery (the extra one my liver had) had clotted and died off and the right one was inconclusive on the scan from there view; that they needed to call the head radiologist and get him to review higher resolution images and that they would let us know within the hour.

We made our way back to the room and sat, we cried, we went insane, we were lost.  We all at this point I feel lost most of our hope for the "best" outcome, as it seemed evident that a major turning point was about to happen.  As we waited, we consoled one another, we grieved in our own ways, and some of us made mends with loved ones...this was a really hard time; it was like minutes were hours.

We received a call from Dr. Kim (she is amazing by the way), she said that the radiologist was confident that there was still flow in the right artery; that we are not out of the woods just yet, we need to be cautious but was optimistic and they're going to watch Dylan very closely.  We were told that morning labs would be a good indicator if things are going bad, stabilizing, or getting better.  So we took a breather and decided it was good news that we just heard, and we would hold our thoughts until today.

We got Dylan's labs today and as much as we prayed and hoped for them to be better, they were not.  They had gotten a tad worse on some, a decent amount on others, and some unchanged, as well as a few better but the one's we needed better didn't get better.  We became very concerned but decided not to freak out until we saw Dylan's transplant surgeon, Dr. Esquivel.  Around 2:30pm today Dr. Esquivel came in and gave us a very concise run down of what was going on.  He told us that he is concerned for Dylan's situation but is optimistic.  Also that he is not willing to treat it with more drugs, the side effect(s) could make things worse.  He feels Dylan should be given the chance to do well on his own and allow his body to do what it needs to do and that tomorrow labs if they come down will be a good indication that things are back on track and in the right direction, if they rise again that he will have another conversation with us and start discussing rejection a bit more (as the 2nd week is the week you worry most about rejection).  Dylan's Prograf levels are on the higher range of the scale.  He is going to taper him back even more than the typical threshold for patients and hope that it makes an effect on this and his labs.

I must say, when this man speaks, I don't even know how to explain how it makes us feel, he has such an amazing way about himself.  Aside from the fact this man has saved my son's life and countless others; when in his presence you feel a sense of relief and that whatever he says one knows its the truth that is backed up by intelligence, integrity, experience, and mostly compassion.  This man is one that I will never be able to put into words properly of how I feel around him.  Honestly he may be God, as odd as that sounds, this man has the touch of an angel and one that only God could have purposely put on this earth.  He is a remarkable man.

Tomorrow is another big day for us, please continue to keep our son and family in your prayers, I know the tremendous amount of support and words being sent above are helping us through this most difficult time of our lives.

-Noah

Well today started off in the right direction for Dylan. We were told early in the morning Dylan would be able to start clears and would be moving up to the main floor. That is right...my child is a stud. Dylan has amazed all the doctors with his quick recovery. I know it is because Noah's liver is just perfect for him. 

We are now on the main floor and in a private room due to Dylan being immunosuppressed. Our room is really nice. The best part is the shower and bathroom in our room. That I could get used to. Dylan is down to one central line in his juggular and a line in his arm as back up. He is having clear liquids and let's just say everything is moving in the right direction ;) If it continues this way he may move to solid foods as early as tomorrow. 

Noah has had it rough. The pain meds make him feel woozy and out of it and he is not being able to sleep. He called me tonight pretty upset. He has not slept in days. I called the charge nurse in Noah's unit and let him have it. It is completely unacceptable that Noah is not being managed properly. I can not be with both of the guys at the same time and I feel that it is their job to make sure he is comfortable. Noah called me back later and sounded better. I then talked to him on the phone until he was sleepy. I hope now he is resting. I will post more tomorrow, but now time to try for more than 4 hours of sleep.

-Amber

I apologize there was not a day two post. As you all can imagine it can get pretty crazy here in the PICU. Over the past two days Dylan struggled with his breathing tube. He hated not being able to communicate with us and actually started biting on it. They were concerned that he may actually close his airway this way. After many attemps to keep his blood pressure at a certain level we lowered and discontinued Dylan's heart meds and finally got to get the breathing tube out. What a great moment. It was wonderful. My baby could talk again and he was much happier. Dylan's pressures have remained normal and in the target range they want. We have also been able to remove two of his many lines. There is talk of maybe...just maybe clear fluids in Dylan's future tomorrow. He has recently started saying he was hungry and thirsty so this would please him for sure. Dylan's pain is managed pretty well. They have him on a small dose drip of dilaudid with a pain button. So far so good. Noah on the other hand is having A LOT of pain. I feel like he just can't get a break. They had switched him from dilaudid to fentanyl and it was working for a little bit. Last night I checked on him and he was burning up and his stomach was rock hard and tender. I felt terrible I couldn't be there more for him. It is so hard because I would love to be in two places at one time. I feel like he must feel neglected. Today Noah lost his iv's due to infiltration and after multiple tries to start another iv an air flight nurse finally got a line. This irritated me beyond belief and I felt helpless. A doctor finally came in to see Noah tonight. They have given him a sleep aid so he can get some rest. He has not been able to rest at all. 

There was a highlight of the day...Noah got to come see Dylan. It brought tears to my eyes. What a magical moment. The look on Noah's face will forever be etched in my brain. I am hoping Noah feels good enough to come down again to see him. I think it will help them both to recover. 

I want to thank all of my amazing family and friends. The past two days would have been far worse alone. So thank you. I will try to update as we go. Please continue to pray for my boys.

-Amber

Transplant Day 1
02/07/2011
After an a very sleepless night last night we arrived at the hospital to register Noah on the Stanford side. I don't know how to explain the sheer panic Noah and I both had. We waited for Noah to be called back in a room full of other patients waiting to be called back for their surgeries. The nurse came to get Noah and the proceeded to tell us that Dylan would not be allowed in the holding room in the back. What? How could they expect Noah to wait alone for almost two hours? Needless to say I was visibly upset. I tried so hard to hold it back. I did not want Dylan to see me upset, but it was impossible. We were already going to be apart for days after and they were taking away, for me, extremely important time together. We had a few moments in the hallway together and then they took Noah back. Dylan and I found a chair to cuddle in and he drifted off for a little bit. About fourty five minutes later I got a phone call from the pre op nurse. She was going to break the rules and allow us back. It was so wonderful to know that we had such a caring person taking care of Noah. We waited with Noah until anesthesia came. Leaving Noah was the hardest thing I had ever done. I wanted so badly to be in two places at once. 

When we went downstairs my sister and dad were in the cafe. We sat down and talked for awhile. Dylan was feeling the nerves, but doing really good. More family poured in… It was so wonderful being surrounded by ten Dylan and I went down to the surgery center. We waited for about thrity minutes before I went up to ask when he would be going back. As I sat back down to wait again the fellow, Dr. Kim came in to say they were ready NOW. Dylan got instantly upset. Crying and saying he didn't want to do it. Our anesthesiologist was amazing. He treated Dylan with respect and helped him feel as comfortable as he could. It made it so much easier for both of us. Dylan got oral versed and then the IV was started. He then gave dylan even more versed. He was pretty snuckered out and didn't even realize they took him away from me. It was about this time I lost it again. It is terrifiying...leaving your baby. I was then alone and I felt just that. A volunteer showed me to the cafe to my family. 

I got word that they stared Noah at nine and that they were just now removing his portion for Dylan. Everything looked great. Noah was doing well. We waited for what felt like forever and then Dr. Bonham came to tell me Noah was done and in ICU. I was told I could go see him at three, just an hour and a half away. While waiting I got word that Dylan's liver was out and Noah's was in...Dylan was BA free. When I got to the room I could tell Noah was in a lot of pain. It was hard for them to manage. After a bunch of back and forth they gave him fentanyl instead of dilaudid and it seemed to help more. It is so hard seeing him in that much pain. I just wanted to fix it. I did get to tell Noah that Dylan was doing good and that everything was going perfect. I went downstairs so his family could go up. Then I waited for Dr. Esquivel to come down to talk to us. 

"His liver was a lot sicker than we thought"...I can't say I was surprised. I had a feeling. He said it was "hard as a rock" and "very shrunken". I am so happy it is out. After 3 more hours we were allowed to go back. He looked great. We are having minor blood pressure iissues and he keeps trying to pull his breathing tube out. Right now we are trying to keep his blood thin to avoid a clot in his new liver. There is a lot of fine tuning to do, but that is why we are here in ICU. I will post more after a much needed rest. Thank you for all the prayers and good thoughts...and please keep them coming.

-Amber

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