More Confusion 04/11/2012
 04.02.2012- Getting Labs @ LPCH We often times like to hold our breath and not post until we have a good few weeks of "uneventful stuff", its not that we don't necessarily have anything to post about but with this life you can't just jump to the worst of thoughts and certainly can't hold those thoughts to be true until a little time has passed and you get some breathing room....or a few sets of solid labs, no sickness, no hospital stays, and/or as stated before not much to report. At this point this is when most of us living this life will let our guard down and attempt to go about our everyday life and assume we are on a good path for what we hope will be the foreseeable future. The last few months have been a bit unpredictable with lots of up's and down's by way of colds, asthma, infections, and pesky labs not doing what we hope or expect. Our daily life of attempting to have normalcy and just go about our business of raising our family, working (if only to try and pay for the darn insurance), and doing the best we can hit some major hiccups as of lately. On Monday of last week we had a "normal" follow-up clinic visit with Dylan's transplant team at Lucile Packard Children's Hospital, it was to be our every other month visit (we alternate between Kaiser one month and LPCH then next, that way Dylan is followed at min every single month and see's a physician that is familiar with him and his condition), we arrived bright and early 100+ miles away from our home to have labs promptly at 8am. After labs Dylan is given his Prograf and his 1 hr wait starts. While waiting for his med to absorb we always make a point of heading over to the hospital side of the facility to head down into the cafeteria so Amber and I can grab some much needed coffee and be close to food so Dylan can eat when he is able to. As we made our way into the cafeteria and sat down with our coffee's we received a call from our transplant coordinator whom advised us that Dylan needed and "immediate ultrasound of his liver" and to head over to the radiology dept. A sinking feeling came over us and we knew where this was headed, only time we are called within 15-30 mins of labs is when something is not correct and/or there is major causes of concern. We made it through the ultrasound exam and headed back to our transplant team to finish out what was suppose to be our normal doctor visit/checkup. Dylan's doctor advised us that Dylan's labs were really high and they did the ultrasound to ensure he has proper blood flow and get a look at the liver. The results were ok on the ultrasound but they advised us that with labs this high he needed to have another liver biopsy; as they have to physically rule out rejection and how they treat is dependent on this critical factor. So we would need to come back the following day to have that done. In addition they wanted a MRCP, which is a MRI that looks at the bile ducts of the liver to again ensure they are functioning properly and are open without obstruction. We were advised that they would be admitting Dylan the following day for the biopsy and they would do there best to coordinate the MRCP within a day or so but they couldn't have it done same day (it would of been nice if it could of all been done same day, that way he only gets poked for one IV and only needs to go to sleep 1x time as opposed to two separate procedures). Unfortunately this is how it works out often times. The hospital is like a toll booth and you have to wait your turn to use the fancy machines that literally run non stop and of course its done by priority/severity of person needing it.  04.03.2012- Dylan really upset about having to go to sleep for his biopsy As we prepared for our stay for yet another biopsy Dylan was very upset. He cried the whole way in the car and was just down right really unhappy about having to do this again. He even commented to me, "Dad, since this is your liver in me can you do the biopsy for me". As much as I wished I could do that for him, sadly I couldn't and he just didn't understand why he has to keep doing these. I won't lie and I'm sure I've said this countless times over and over but this stuff and answering the questions and why and giving reasoning to something I can't even fully comprehend or explain is very difficult. I think as parents we are so accustom to just saying "You're going do this or that because I said so". But this situation and this life doesn't warrant those types of responses, at least not from us. We have to support him the best we can given our means of how we know best. In one sense, how we respond to him now and with this turmoil and very scary stuff truly does mold him into whom he will become. He is a little kid going through stuff that makes grown men/women scared for there life and unfortunately this stuff he does over, and over, and over again. I will say we also make a point of not babying Dylan but at the same time he deserves some serious slack...it truly is heartbreaking watching him and how his brain works and hear the fear in him (all of which is understandable). We made it through his liver biopsy and as usual no results come back from that for at min 24 hrs. So Dylan and I hunkered down for a restless and sleepless night in the hospital. Amber was able to go crash out at our close families place that lives nearby (we are very fortunate to have family fairly close to the hospital and we are eternally grateful that we are always welcomed into there home in a time of need and spur of the moment, as when this stuff happens it disrupts there lives as well by lending a hand to us...its truly one less stress to think about on our end and we're so grateful to them.)  04.03.2012- Dylan in recovery after liver biopsy The next day (Wednesday) the transplant doc(s) came in and said preliminary results of the biopsy looked good but Dylan had a high number of Eosinophils in his liver. These are a cell that are found in rejection but "typically" with rejection there are other cells notated in conjunction with these Eosinophils. So for the moment they advised that they don't believe he had classic signs of rejection going on but also weren't quite sure either. They suggested maybe he was having an allergic reaction to his Prograf, so they wanted us to meet again with the allergy folks to rule out, our at min discuss this being an allergy; albeit to one of his medications or environmental. Before long the Allergist folks arrived in the room and discussed Dylan's meds, living situation, or traveling situation (or should I say lack thereof as we don't go anywhere). After all this, towards the evening we were cut loose from the hospital and advised we needed to be back Friday to do his scheduled MRCP (ugh this was a bummer that we would go home, then make our way back only 36 hrs later). So we would get one day of relief thus far, the following day would be spent with me trying to catch up at work and Amber trying to hold down the home front...thus far it had been a busy and very exhausting week.  04.06.2012- Waiting to be called back for MRCP Friday was upon us and it was another early morning start on our end. We arrived on time and waited in the Ford Family Surgery Center of LPCH, waited for our turn to call Dylan back for his IV and sleepy medicine....again. Some will say this should be "a piece of cake", "easier with each time", "he must be use to it by now". Let me assure you as a parent this has yet to become or feel natural in any manner. Waiting with your child in a surgery center and knowing what comes next is not a comfortable feeling...no matter how invasive the procedure may be. Dylan was called back to have his IV started and start prepping for him for going under general anesthesia. The nurse attempted to get a IV started for well over 10-15 mins and blew out 3 of his veins on his forearms and hand. At this point Dylan had been stuck almost a dozen times over the course of the last 5 days. I'm sure he was a bit dehydrated as well b/c he was now going on his 2nd anesthesia procedures where he needed to fast for a total of a days worth of time. Little kids aren't like adults, its much harder on them when they need to fast this long. After Dylan was put under we made our way to the waiting area that houses all the other parents that are awaiting for there child to get out of surgery and/or procedures and this is some of the most difficult times...you just sit and wait and wait and wait. They have this encrypted TV monitor that is a digital display of patients in/out of the rooms. They also give you a pager thingy, one like you would get while you wait at a restaurant. You sit and can't help but start thinking about what number is my kid on that TV, what if the pager thingy isn't working properly, what if they don't come get us in time prior to him waking up, etc... It really is not fun to sit in this room and stare at the walls and just think about things, as the mind has no option but to wander. After an agonizing 2.5 hrs I was led back to the recovery room where I get to sit with Dylan and comfort him. I encouraged him to eat his popsicle, drink some juice, and become more acclimated with his surroundings. We were only in recovery for a short while and it was just what we needed. Our 4 days out of the last 5 day ordeal was at least at this moment...over. Over the course of the following 24hrs we received calls from the Allergy department advising us that this for sure was not related to any medication allergy and they strongly felt this was not from any allergy related incident/environmental. The transplant coordinator also advised us that Dylan's MRCP looked good from the preliminary results and they would contact us later in the week to see what the next plan of action is. Although its good that Dylan's Liver Biopsy and MRCP seem "good" and that does have some comfort, its not comforting knowing we just went through a hellacious week to literally not know the cause of what is causing these issues in Dylan. Their is nothing natural about worrying for your child's health. These procedures feel like a fresh new wound each and every time. The hope is its one step closer to answers; sadly oftentimes its more confusion and more procedures. -Noah 2 Comments A Year Later... 02/07/2012
 Marin Headlands (02.2012) Hard to believe I sit here and type 1 year later to the day that Dylan's liver transplant took place. We call this day, Dylan's "Transplanniversary", pretty scary to think a year has already come and passed. From fears of the what if's, to going through the process, to the constant fears of the unknown, and of course all the in-betweens. What a trying year this has been... I remember leaving our house the night before and making that roughly 2 hour drive from our house to my cousin's house near the hospital. We had intended to leave early and arrive early but that's not how our day went. We had so much on our minds that we didn't end up leaving our house until about 7-8pm at night; arriving to Stanford area around 10pm ish. The whole day was a process; I recall mentally it being very hard. A lot had been going on to keep us occupied up until this day, lots of friends/business associates/caring people were doing lots of fundraisers for Dylan and a tremendous amount of love and support was being shown for our family. Perfect strangers offering support online, old school friends giving well wishes, to lots of family being available to give us the best advice and support they could. The truth of the matter is, there was not much any one person could say or do to prepare us for our night and upcoming days ahead. And before we could turn in for the night, both Dylan and I had to shower with antibacterial soap in preparation for surgery the next morning. I recall as I was washing Dylan that I became really scared, so incredibly terrified for him, and in just a state of disbelief for our situation...Before we went to bed that night, Amber/Dylan/I all prayed; although that sounds like a typical thing to do, this is not something that I had ever done in my life before, as its not how I was raised. I couldn't help but ask the typical questions that anyone would ask. Why is this happening to us? What will happen to him? Will he be ok? Will this fix him? Going to bed that night was beyond hard and it was short lived with very little sleep. Most of you reading this, came into our lives around this point...Surgery day. I wont bother with the specifics of this time of our life b/c a lot of you have followed our story and read it already. One of the things that I think we never mentioned much is what the docs prepared us for prior to surgery. Prior to surgery we had many meetings with docs, social workers, donor advocates, etc...the one thing that still sticks out in my mind and one that I had hoped Dylan would prove them all wrong was this transitional period after transplant. I recall us meeting with Dylan's transplant surgeon and discussing how things will go and what we can expect. The one thing that I can never thank this man enough for is his honesty. Dr. Esquivel never sugar coated anything at any point on how challenging this would be, he wasn't one of those docs to just keep silent about things, he actually advised on how incredibly hard it would be on all of us. You see lots of folks like to think of this type of surgery as a end all be all "fix" and as much as we wish/hope for that as well...we knew better and Dr. E made sure we were understanding. I remember him vividly telling us that "you don't want to have a liver transplant, that if there was a way to avoid it they would but in doing so you trade one life for another". We at one point pressed on about this "trading one life for another", and luckily for us Dr. E kept true to who he is as a surgeon and a person...he went on to explain for starters the very risky surgery, the extremely hard recovery, and the new life on anti-rejection medication. The main stress was on these anti-rejection meds, these can be worse than all that we needed to go through. Hearing about medications causing cancer, liver damage/failure, and death as a result of it...I will admit it was so hard to comprehend how one can go through all this hardship, pain, stresses and than have to be on medications that can cause just as bad a situation than the unfortunate one Dylan was born with....seemed cruel, unusual, and I think its fair to say it just didn't register in our brains properly. But like anything else in most people's lives, how does one truly understand or know what its like unless you walk that walk. We had no choice but to almost turn a blind eye to this information as we truly couldn't relate to it at the time. As you know Dylan and I made it through surgery day, had some rough ups and downs in the hospital but none the less we were in and out of the hospital in what I would consider an amazingly short time frame...especially given the unbelievably complex surgery such as we both had. This brings us to the last 365 days of our lives. Over the course of the first few months we actively did everything in our power to get back to a sense of normalcy. I think we longed for a less eventful life; one with less doctor visits, lab pokes, and more time to feel like every other "normal" family. These first few months were extremely difficult, constantly heading back to Lucile Packard for follow up visits and adjustment of medications. Not everything has gone as planned or maybe its best to say not everything has gone as we hoped for. We unfortunately now truly understand what Dr. E and the other docs were talking about...again, unless you live it, you just can't relate to it and even though we were living the life we still couldn't grasp what we were in for. Dylan has spent the better part of this past year in and out of doctor offices, labs, and hospitals. His medications have been altered so many times we have lost count. The only way to truly understand and grasp what's he's gone through is to take a quick snap shot into his life over the last year. - 4 Separate Hospital Stays - 2 Liver Biopsies - 1 MRI - 1 MRA - 2 CT Scans - 10+ Ultrasounds - 3 Emergency Room Visits - 17 Days In-Patient - 10 In-Clinic IV Infusions - 14+ Urgent Care Clinic Appointments - 30+ Transplant Clinic Appointments - 100+ Lab Draws - 2,500+ Doses of Medications The life we had longed for Dylan, we still do. It's not our life and its simpler means we seek for ourselves but rather taking a look at what this little boy has gone through and realize at some point and on some level...the tides have to turn. We can only hope and pray that this challenging life we all live will slowly fade with time. We do the best we can and with that we have to continue to press on for Dylan. We know that Dylan will forever live a "different" life surrounded by medications, doctors, fears of side effects to the meds, and the wonderful/special place that Lucile Packard Children's Hospital is. This is now a realized realization and one that is a tough pill to swallow but we are fortunate that we have a place we can trust, a place that will continue to care for Dylan when the tough gets even tougher. Thank you to the surgeons, doctors, caregivers, family, friends, business associates, and perfect strangers whom have banded together in unity for our son. To those who have written us emails, commented on the site, and selflessly donated money to our family during this continued extremely difficult time of our lives....there are no words that give enough thanks; we truly Thank You from the bottom of our hearts. This is a lifelong battle that has not been the easiest life to live but I couldn't imagine it being any other way, as the alternative that others have been dealt is one that I'm not willing to face. Please keep Dylan in your prayers, keep good feelings towards him, as this last year has proven to us that in an instant it can all change. -Noah Here We Go Again 01/20/2012
I think with this update it is best to just pick up where Noah left off. The Monday after our stay at the hospital I took Dylan in for labs as his team had requested. We went to our local Kaiser for these so I got results pretty quickly after. I was pleased to see a really great improvement in the numbers. Almost all of his values were back in the normal range. I alerted the transplant team and was asked to come to Stanford the following Thursday for more labs and a clinic appointment. So Thursday morning I loaded up the kids and made my way over. I have to say that I was a bit stressed making the trek on my own. There really isn't a place to pull over if Tegan was to start crying, but luckily she stayed asleep until we got there. It seems it is always an ordeal getting labs drawn after a hospital stay. For one, Dylan's veins are all but shot after being poked over and over for daily labs while inpatient and second, Dylan always seems to have a bit of post traumatic stress disorder after an extended stay. We are lucky though that Dylan has come to trust one of the phlebotomists at Stanford, Teresa. She always seems to put his fears at ease. Dylan found the courage and pushed through. I got a phone call from our fantastic coordinator who told me the doctor could see Dylan earlier than his scheduled appointment. This would make it so we could get on the road back home sooner. We made our way over for clinic excited to get it over with and go home. The doctors checked Dylan out, asked if there were any new symptoms and looked at his now fading rash. Just when I thought we were done they dropped a bombshell. The doctor's exact words were "we have a problem". He then handed me a copy of Dylan's labs. My jaw literally hit the floor and my heart sank. My little boy who seemed to be feeling better was in fact VERY sick. Dylan's liver numbers were sky high; so high I was instantly afraid. Their fear was that Dylan was in rejection. That maybe the infection he had the week prior caused his body to attack his liver due to them having to drop his anti-rejection medication. We were immediately scheduled for an ultrasound that day and sent down stairs for yet more lab draws (checking them again to make sure it was not a lab error). Dylan was also set up for a liver biopsy the next day. My little guy would have to go to sleep, again. Needless to say we were all pretty upset by this. I called Noah to let him know and he was just as shocked as I was. He then drove down to help me out as it seemed it was going to be another very long day. Dylan's ultrasound looked good. We could visualize his blood vessels and there was nothing alarming that we noticed (we later received a text from our coordinator confirming this information). We made the trip home to pack a bag. We had no way of knowing if we would be staying for a couple days or a couple weeks. I still had a bit of a bad taste in my mouth for our last visit and cried the whole way home thinking about having to do it again. Having to leave my little guy each night and lay in bed thinking about what both my guys were having to deal with while I was gone. It is hard to live this life. I call it Liverland...a place constantly surrounded by medical personnel, medications to take and procedures to go through. It is a very hard life for Dylan, but I think it affects everyone directly involved. Noah and I ( and Tegan once she realizes what it is all about) have to watch our child suffer through this terrible disease and there is NOTHING we can do to stop it. His grandparents, aunts, uncles, cousins and close friends wanting to help but not being able to do much for any of us. Just having to "watch" from a distance. I think it even affects everyone who reads this blog to some extent. All I can say is I wish Liverland did not exist. Friday came too soon. We got up and got ready. You could feel the tension in the air at home. No one wanted to do this. I wanted so badly just to say no and go back to bed and cuddle with Dylan, but that was not an option. Dylan was so nervous on the drive over. He was crying and saying over and over how he was scared to have his biopsy. He was terrified to be put to sleep again and I don't blame him. He had been through so much with his last stay and now with it still fresh in his mind he had to do it again. We made our way down to the surgery center to get Dylan checked in. The first words out of the woman behind the counter were " she can't go back there" pointing to Tegan. We never said we were planning on it. It was down right rude in my opinion. Well I lost it, just the week before I was with Dylan during induction and now it wasn't allowed. I was already dreading the recovery time. I knew he would be in there for 4 hours and Tegan would not be allowed back. Now they are telling me I can not be back there while he goes under and with the exception of his two major surgeries I have ALWAYS been there for him. I could not control the tears. This only made Dylan more upset, but my emotions got the best of me.   We waited for over an hour past Dylan's scheduled biopsy. It seems they had a PICU case that took longer than expected. Dylan's name was finally called. The game plan was to have Noah go back and get him set up and that we would switch places for the IV and then we would switch back again. Dylan was brave and went back with out me. I then cried some more. Having your child go under general anesthesia is nerve racking. There is always a possibility of something going wrong. Being there while they go under gives you a little piece of mind that they will be okay. I was having that taken away from me due to hospital policy. It wasn't long before a nurse came out to tell me they were ready for me. She held Tegan for me until Noah came out to grab her. When I came into the room I could see the fear in Dylan's eyes. I wanted so badly to take his place or find a way to take the fear away. The anesthesiologist placed the iv with out any issue. He then told Dylan that his mom, dad and baby sister would be able to walk him up to the procedure room. I picked Dylan up and we made our way toward Noah in the waiting room. When we arrived at the procedure room I said my goodbyes at the door and sat in the waiting area for Noah. Before I got too comfortable Noah made a quick entrance into the waiting area. It seemed Dylan wanted mom in the room. Noah grabbed Tegan and I made my way back. As far as inductions go this was one of the easiest. The doctor gave him plenty of medications to calm down with before giving the main medication (propofol). He still complained about not wanting to go to sleep, but there was no screaming or tears. He calmly stated he was NOT going to sleep. He fought pretty hard to stay awake, but when he was finally out I made way to the waiting area. I believe it was only about forty minutes and they were done. We then headed to yet another waiting room, it was here we waited for over two hours while Dylan woke up from anesthesia. Noah went back first to see Dylan. I was sure he was still a little groggy and Tegan was due for yet another feeding. As a side note, it is a pretty hard task caring for a new born away from home. The constant feedings and diaper changes alone will drive you insane, but when she gets fussy it is enough to send you over the edge. Tegan being only 4 weeks old it is hard to expect anything else from her. About an hour into me waiting a hospital worker came out to see if I wanted her to hold Tegan while I went back. I don't think I have to even mention that this was not okay with me. I thanked her, but said I would just wait it out as the baby was on a pretty frequent feeding schedule. Now I am not sure what happened. I am not sure what starts aligned or what power that be told this woman, but she grabbed my diaper bag and told me to follow her back to recovery to see Dylan. I was beyond happy and have never wanted to kiss a complete stranger so much before. When I got there Dylan was still asleep and stayed that way for about another hour. At four-thirty we finally made our way to our room. Now with all biopsies they keep you over night. The liver is a vary vascular organ and the need to ensure that there is no internal bleeding for the site of the biopsy before they send you home. For the first hour on the floor we had a baby for a room mate. We were all pretty happy to see the baby move out of the room opening up the bigger portion of the room for us to move to. Getting any sleep in a hospital is hard enough with out a baby in the room. I can remember having to do that when Dylan was little and it is never easy. Dylan ordered up some food and we hung out for the night. Noah's cousin brought us some delicious food for dinner. It was a great little mood booster. Around ten-thirty I headed to his cousin's house to get Tegan in bed. Even though we are up about every two hours I think she gets more rest away from the hospital setting and the more rest she gets the happier she is. Noah spent a better part of the night scratching Dylan's itchy spots and giving him love. He misses me pretty bad at night. With the exception of my recent hospital stay after giving birth I have never been away from him at night. He has always had his mommy there to kiss him good night. It is pretty sad for me to even think about now, but I guess there is no changing it. The next day the nurse came in and said that Dylan did not have any labs to get done. Sounded good, but Noah knew this was obviously an error of some kind. Dylan was in the hospital for possible liver rejection and he most certainly needed labs done. After a bunch of back and forth liver function tests were ordered. We waited for rounds with the doctors. They came in and stated that his liver tests looked much improved. His values had dropped and it seemed almost because of the two doses of IV cipro he had due to his biopsy. We were informed it could be a case of cholangitis Dylan was dealing with. This was the exact thing we had suggested to them with his prior stay. This was the exact thing we were told really didn't happen post transplant. It was aggravating to say the least, but at least if it was it was treatable with more antibiotics and it would mean it was not rejection. Our next task was wait for biopsy results. These results usually come early afternoon so we had some time to kill. Dylan had some visitors stop by. We first had a friend/customer of the shop come by with a special present for Dylan. I am always impressed with the support others have for Dylan. It truly warms my heart and reminds me that there are still amazing people in this world. Thank you Matt for stopping by to see Dylan. Dylan also got a visit from his future wife and future mother-in-law. Our dear friend Jessica and her daughter Rylie came over to see us too. Dylan's mood instantly changed. Life came back to his eyes and he started acting like his regular self again. We ate lunch together in Dylan's room and continued our wait. It was about another hour or two until we saw the doctors again. The verdict was in...there was NO rejection. Dylan's liver cells looked normal and relatively happy. This led us to believe that Dylan did in fact have cholangitis. Dylan would be discharged that day. He would be sent home on three weeks worth of Cipro. This is a pretty hefty antibiotic and would be able to wipe out the bacteria making his liver unhappy. We are not sure if this is something Dylan will have chronically or if this is a lone incident we are dealing with. The plan however, is to treat any fever Dylan develops with Cipro. Having his numbers go as high as they were can cause permanent damage if it is not treated promptly. We are lucky his labs were repeated when they were or it could have had a very different outcome. It is moments like this in our life that we are faced with the reality that no matter what our lives can be turned upside down with no warning. We need to be on constant alert with Dylan. The problem becomes making sure we still enjoy life. We have to find the balance between acting like there is nothing wrong and always being on our A game ready. Tegan has grown so fast these past few weeks. She weighs 10 pounds now and is almost 5 weeks old. I feel like I didn't get to enjoy her as much as I wanted too. I guess this is where the juggling of two kids begins. The positive is that she won't remember this part of her life. She won't remember how messy our house was or if there was laundry to be done. I am looking forward getting back into a normal routine. I know it may be short lived but I plan on enjoying every moment of it and soaking my two kids in.  Taken by our friend Rachel. Simply Joyful Photography -Amber Happy New Year...Kind Of 01/08/2012
 For most it was I'm sure as happy as happy can be ringing in the New Year! Us like most are very appreciative of all that has gone on over the past year and not that we're looking to get past it as if it was a bad thing but really more or less just looking forward to new beginnings and better health; a less emotionally/medically involved new year was what we we're potentially hoping for. That's not how our new year happened to go. Our New Year's Eve was like most, hanging with family and just enjoying each's others company. At around 8pm Dylan seemed a bit irritated and not like his joyful self (we noticed it very quickly b/c his 2 year old cousin was here and he was being very irritable, which is never how he is with her). Amber quickly touched his forehead and noticed he was extremely hot, a quick gauge on the inner ear thermometer showed he was just about 100.5, this was troublesome b/c this literally just appeared out of nowhere and to top it off Dylan NEVER gets temps, and if he does its never a good sign. Our threshold pre/post transplant with temps has always been 100.5...this is a critical temp to start watching like a hawk. Being that it was NYE, we wanted to make sure Dylan was ok and comfortable, so we gave a dose of Children's Tylenol, which within 45 mins had his temp back down to normal (as expected). In addition to his temp he had a fairly bad rash all over his body and it seemed to be getting worse. I during this time had grabbed the phone and called the Stanford transplant team to discuss what was going on, being that it was the weekend and a holiday weekend I chatted with the on-call pediatric liver specialist. I was advised that they weren't overly concerned, she mentioned she had reviewed Dylan's labs from about 4 weeks ago and all looked well then, she mentioned that we did the right thing with Tylenol and just to monitor it and maybe come to clinic in 2-3 days if things don't get better (which would of been that coming Tuesday....3 days away). Our night was nothing extravagant, not like we are out getting smashed, those days are long over and thank god for that, as our night was about to take a turn for the worse. At around 3am we awoke to Dylan making grumbling noises, Amber yet again tested his temp and to our dismay it was now at 102.5. This had us literally pop up out of bed, rush to get more Tylenol in him, and monitor him over the course of the better part of an hour to ensure his temp came back down, which it did. At just before 6am, the same noises could be heard from Dylan again. We tested Dylan's temp and astonished it was back up to almost 103 now, this had me calling the doc again. While on the phone with the doc I continued to advise her how much fevers are very terrifying to us, as in the past they have only represented very bad signs that something bad was going on inside Dylan's body. Now that he is no longer pre-transplant and is now post-transplant, we don't know if those fears should be viewed the same...so we heavily rely on the influence of the docs to ensure we make the right decisions. The on-call doc said that she felt giving Tylenol again made sense and that she would call Dylan's Stanford GI doc and get back to us. At around 8 am, we received a call from the on-call doc, she advised us that she chatted with Dylan's primary GI doc whom agreed that Dylan should be seen at the hospital. They also advised that they had cleared the way for us to not have to go through the ER and go directly to the 3rd floor (this is the floor that houses all the very ill children at Lucile Packard Children's Hospital, and the same place where Dylan was after his transplant. So here we were, not even 8am and we needed to travel just about 2 hrs away to get Dylan to the hospital; to make matters worse, we have a brand new 2 week old baby and don't have our house, our laundry, or really anything completely in order as Christmas was just a few days prior and not to mention Amber had just given birth as well. Life was a bit on the chaotic side to begin with and now we needed to pack a bag (just in case we had to stay the night) and get on the road ASAP. Dylan's fever was again climbing and now was hovering in the 103 range. We quickly put a bag together, fed our 3 dogs, showered as fast as we could, and bolted out the door. It was now a bit after 9am. The trip to Stanford is typically a 1:45 min drive or 3 hrs depending on traffic, being it was the now New Year's Day, the roads were empty and allowed us to make good time. But while in the car Dylan's ever now spiked to 103.7, we didn't want to give anything that would interfere with the docs plan so we just rushed as fast as we could to get there. I'm not overly proud to say it but we made really good time, it only took about 1:15 mins to get to the hospital and that was 100% related to my driving and the speeds I was traveling to get my family in a safer spot. This was a really scary thing to watch Dylan being so ill so I did what I needed to do. Once at the hospital we advanced directly upstairs to the 3rd floor and were fairly promptly greeted by Dylan's transplant GI doc (whom happened to be on call in the hospital but was just getting off). He mentioned they would run some tests and see what the outcome of those tests were. Dylan was very uncomfortable and appeared to being taking a turn for the worse but we knew he was in the right spot for care. Hour after hour we sat and waited for an update on Dylan, they were constantly coming in and doing vitals but no fluids, no IV, no real plan was given to us as far as treatment goes and/or what they felt might be going on. At around 1ish they came in to take labs, we told them to just go ahead and stick an IV in, just in case he needs it later (might as well only poke once then have to do it all over again later on). The nurse agreed and started the IV and drew his labs. Again, hour after hour we waited and waited...they had at least started fluids in Dylan b/c his urine test showed he was a bit dehydrated but nothing more had really been mentioned in regards to what might be going on with him. Now it was 7ish at night and we requested the lab results from earlier. Not all of them were ready but the main ones that test his liver functions and Blood Chemistry were in. Once we got these labs, our jaw hit the floor, all of Dylan's liver functions were elevated and very high, in addition his white blood cells were extremely low (this count was only at 1.2, and his absolute neutrophil count, which is the bacteria fighting cells, was at 0.2 = 200, CRITICALLY LOW. For those that aren't familiar with lab values, thats a figure that made us almost hit the floor. Normal range is 4-8k. Dylan was also looking yellow to us and it made sense, his bilirubin showed it was really elevated. In addition his synthetic functions were all terrible, his ability to clot blood and process proteins was significantly compromised). At this point nobody even had discussed these labs with us, we were deciphering them ourselves b/c we hadn't seen a resident in hours (on the weekends typically there isn't the whole transplant team around, most often its residents, whom refer up to the fellows for advice). It was then we called Dylan's GI doc at Kaiser and went over the labs with him, he was very concerned and advised us to get the nurse immediately and advise them he needs IV antibiotics NOW. I went and grabbed Dylan's nurse and got really snippy with her, saying this isn't right, we hadn't seen a doc yet to discuss these labs, have anyone discuss a plan with us nor had Dylan gotten any better. I told her we had to contact our doc at Kaiser to discuss a plan of action and that he advised he needed antibiotics ASAP. Its not to say that the antibiotics were going to fight whatever he was going through but it was to prevent a secondary infection if he was to get one, being as his WBC's were so critically low. At around 8ish, Dylan was started on IV antibiotics and more fluids. Dylan continued to have an extremely high fever in the 103+ range. Time continued to pass by and by this time it was now 1am. A resident came in to do more tests, this time it was to be 3 nose swabs and 2 throat swabs. I had no choice but to ask why this was happening at this late hour, as he had just fallen asleep. The PC way of explaining it was that it didn't get relayed properly from fellow to resident and by the time they got on same page it was now 1am. So Dylan being extremely ill, tired, and emotionally drained he was now being forced to have swabs (which look just like pipe cleaners) up his nose and way back in there, as well as big Q-tip looking items in the back of his throat making him gag. We understood this needed to be done but the hour of which it was happening just seemed ridiculous to us but none the less we pressed on and forced Dylan to get it done and over with, as we of all want answers and this should bring us one step closer. Now it was 3am, a nurse came in and advised us that Amber needed to leave b/c she's not allowed to spend the night with a baby. To say this lightly, we were dumbfounded and completely caught off guard. Where is she suppose to go? Its 3am, are you serious? It was very hard for Amber to leave. She has always been by Dylan's side when he is sick and now she was forced to leave. Needless to say, Amber had to spend the night in the car with our 2 week old baby in the approx 30 degree weather outside (she ran the car for hours just to stay warm). This was one heck of a day, never had we been through so many emotions in one day. From down right fear for Dylan's condition, to lack of communication, to the insane protocol of the hospital not allowing a mother and her newborn to be by her ill child. I can say we felt nothing shy of defeated. Monday was upon us, which was a national recognized day for New Year's. So it was another day in the hospital that was more or less like Sunday. Not to call these folks "B team" but its not the experienced transplant team whom has dealt with Dylan in the past (don't get me wrong, I'm not saying these folks don't know what they're doing but its not the same level as people whom have being doing this for a lifetime, these folks are fresh out of school...qualified but not the same as the others). Monday came and went with very little change in Dylan, it was a round the clock of Tylenol/Motrin being alternated to keep D's temp from being in the 103+ range. More labs, which showed wasn't any better than the day before, some were even worse. His blood cells that were at 200 were now at 100, now EXTREMELY LOW. In addition his Albumin (protein processed by the liver) was extremely low, this was most likely due to the bolus fluids he was receiving. They also started Magnesium infusions, as Dylan's was very low. In addition, an Ultrasound and Chest X-Ray were done as well. The Ultrasound showed his liver and spleen were slightly enlarged and the Chest X-Ray showed a small amount of fluid around his lungs (but wasn't alarming). Infectious Disease also came in to review Dylan and get a look at him. The balancing act continued all day, with no turn for the better from Dylan. That night Amber left around 11pm to go spend the night at my cousins house, which is nearby. Unfortunately she couldn't get in, the lock on the door wasn't cooperating with her...I'm sure being exhausted and having a 2 week baby on her arms wasn't helping any either. Amber had to return to the hospital and watch Dylan while I jumped in the car and went to the house to attempt to diagnose/rectify the problem. At around 1am Amber was finally able to get inside and finally rest in a bed. I on the other hand was dealing with Dylan whom was at this point the worst he had ever been over the last 2 days. The temp was still very high and they changed to a different antibiotics in an attempt to ensure they had a broad spectrum of medicine to cover any secondary infection. Dylan awoke around 4am and called for me. I laid on his bed with him and out of nowhere he said to me, "you will always be my daddy". Seeing him this sick and in this state, I can honestly say that I have never been so scared in my life, why is he saying this to me, does he know something I don't? All I could do is break down in tears and think: God, if there is such a thing, please watch over him, make the pain go away, please heal him....I need him, the world needs him. The night closed out with again zero sleep on my end, I feared closing my eyes and not hearing him in a timely manner. Amber arrived early that AM and Tuesday was already just another blending of Sunday/Monday. Tuesday finally saw our familiar transplant docs. The consensus was that they weren't sure as to what was going on other than they felt all signs were pointing to a viral infection but no idea as to what. And as of this moment all the pending tests were still not back yet, this was most likely due to the fact that we arrived on a Sunday and Monday was a holiday, so we still had a few more days before we found out the results of those items. Infectious Disease had been in again to access Dylan and they felt he didn't have a viral infection but weren't sure. Meanwhile this whole time Dylan is on Isolation and droplet Isolation, this means anytime someone enters the room they must gown up and wear a mask/gloves. No skin-to-skin contact from caregivers were allowed (this is done to help eliminate the spread of airborne ailments from room to room. Remember his WBC's are dangerously low so they want to ensure they don't bring something into his room). The big changes on this day was they removed Dylan's antiviral medication he is on, this is just in case he is having a medication induced toxicity (which all signs pointed towards it wasn't that but they were just covering all there bases). The team also ordered a MRI and CT Scan for the following day. So Dylan would need to fast after midnight. The rest of the day finished out like the rest, no big ground breaking changes, although some of his labs had gotten better (which was a nice bit of news) but still no understanding as to what was causing this in his condition. Later around 2am Dylan awoke again and asked me to come over to him, which I did. Dylan seemed very out of it and was almost in a delusional state. He asked me, "if God would have to take him away to heaven to fix him", I asked him why he would say something like that. He said, "well God takes babies away from people, why wouldn't he take me away", I broke down a bit and advised him he needs to focus on feeling better and nothing else. He went back off to sleep and yet again I laid awake in fear about his condition. I knew today was going to be a hard day due to his inability to eat with the NPO status because of the MRI/CT scan that was going to happen. Wednesday started like the last few days, which was labs but nothing to eat/drink was allowed. At around 9am one of the very nice Physicians Assistants came in and said that they couldn't get the MRI in today so he could eat/drink for a little while longer but had to fast prior to his CT Scan that day. Dylan was a trooper, he did the CT Scan with no sedatives and was very brave. Even though these scans are fairly easy to do, that's not always the case with fidgety kids. I had made the decision to head into work as my job really needed me for at min a few hrs, just to catch up on the weekends online orders. As I headed back into work and spaced out on all that was going on , I ended up getting a speeding ticket...which was just a nice topper to all that has been going on as of lately. Needless to say, we got through the day and prepped for a long Thursday, which is when the MRI was now scheduled for.  Doing an MRI on a child is not as easy as doing it in the CT Scan. Dylan has no means of doing 10/30/60 second breath holds, nor could he be shoved in a tube in a machine and hear those banging noises without freaking out. So this is how our Thursday ended up, not sure I need to say a whole lot on this. Over the years we have had to watch Dylan be put to sleep and it never gets any easier...in fact, it gets worse as the older he gets b/c he is much more coherent of his surroundings, feelings, and ultimately his fears. This stuff truly breaks our hearts and I can only wish that one day these days become fewer and farther between. The good news on this day was Dylan's labs had improved again. He was getting better but still no explanation as of yet. The other bad thing was, by the time Dylan was done with the MRI he had to start his fasting for his Prograf (anti-rejection medication he takes), this fasting is for 1 hr before and 1 hr after...to say lightly, he was enraged that he waited all day to eat but then couldn't once he woke up from his anesthesia.  Friday saw the team in our room again and with good news. They had reviewed the scans and all looked well. They didn't have a cut and dry explanation as to what happened to Dylan other than he must have contacted a virus of some sort that attacked his system. All tests came back negative or were of non concern. We were advised that we can leave the hospital and head home. We were told to get labs first thing Monday AM and to come back to clinic on Thursday to have more labs and clinic. Although this is good news, and we were happy to finally be leaving the hospital, its also a bit concerning that something unexplained attacked Dylan so badly that he was literally fine one day and the next was severely ill. In all the years, pre and post transplant...we have never seen Dylan as sick as he was. Its a constant reminder of how fast things can change. Our 5 day stay in the hospital had now come to an end. In comparison, when Dylan had is liver transplant he spent 8 days in the hospital. Goes to show how serious this was. I have to admit its challenging to live in the hospital but I look around at a lot of the kids and I see there folks carting them around in wagons down the halls, they're wearing masks, some/a lot with bald heads....life can always be worse for sure. I'm grateful that we are treated here, that they are doing what they can (even though its very slow process), and that Dylan has a home away from home (all the nurses/docs remember him from transplant and they truly care for his well being). This is no life I would wish on anyone though but for those that can relate to this, all I can say is, its humbling to know what others sacrifice for the better life of these children (which includes Dylan). I walk downstairs in the hospital and read the plaques of the folks who donate/contribute and give life long estate donations to the amazing place that Lucile Packard Children's Hospital at Stanford is. I wish I could do more for this place and for the kids that have the unfortunate luck that brings them there. Even under all this stress and wanting answers for ourselves and Dylan, I can't help but feel blessed by such amazing individuals that have now graced our life. This place will forever be a second home to us, this place saved Dylan's life just 11 months ago and I know we will have a life long struggle and need for them in our lives forever. Thank God they are here and the dedicated folks who do it. -Noah Trying to Stay Strong 10/09/2011
I am sitting here wondering how much longer I can last like this. It has been a long six years. When we knew something was wrong with Dylan I convinced myself that after his first surgery that he would be fine. It didn't take long for me to come to the conclusion that it was not the case. I spent the next five years waiting for Dylan's "fix". The dreaded T word. It seemed so scary for so long. After Dylan's GI bleed nearly a year ago I was ready for it to be over so my little guy could be healthy. So he could start being normal. I knew the real facts. I knew about trading one set of problems for another. I knew, but I also hoped and prayed that Dylan would be the exception. Some how some way he would beats all odds and we would never look back. I was so naive. Here I thought that transplant would be Dylan's fix. That he would be better after this. Transplant had to be the worst of it. Its not. I feel deep pain for my child. As parents we are supposed to keep them safe and prevent them from harm. My little guy knows nothing else. He knows lab tests, procedures, medications and surgeries. That's what he knows. Life is so unfair. His biggest worry right now should be making a decision between what game on the Xbox he is going to play or who's birthday party he is going to. He shouldn't be worried about taking the goofy medicine (versed) and having yet another painful procedure done. Why? Why was my child chosen for this? I wish nothing more than to be able to take it all away from him. Give it to me. I will carry this burden. I don't want this for Dylan anymore. I want him to be NORMAL. I want him to be happy and healthy. I want him to grow and thrive. I just wish he didn't have this to deal with. When it comes to our family I tend to be the rock. I should say I try to be the rock. I hold it all together in the midst of chaos. It gets so hard sometimes, but then I look at Dylan and I see why I have to. -Amber At a crossroads... 09/19/2011
I told myself I wouldn't write these anymore and hence why you haven't seen updates from me. Tonight I felt it was time for me to do an update and express my thoughts. Less than 2 weeks have passed since our family was thinking the worst was upon us. It was a few LONG grueling days of waiting for more results, we were extremely relieved that some of our worst fears could be set aside; for the time being anyways (when you live this life, you unfortunately don't get the overjoyed relief that all is truly ok). Now only a week later, we are back to where we feared but not just where we were a week ago but potentially in a worse predicament. Every aspect of this is so hard. We have to trust our son's life in others abilities and that they make 100% informed decisions based on our kid, his scenario, and his unique path in this life. The medical field is one that I harbor a love/hurt relationship for. Its something that I think anyone in our shoes would be able to relate to. So much of this is about many factors, medical science and what they know about drug interaction and side effects of said drugs, and the teams experiences with other kids in Dylan's situation. The hardest aspect to grasp your thoughts around is that our kid is constantly put up against this "statistic" that each of these other kids are part of. Almost like standing in line at a deli and taking your ticket and waiting for when you're called upon. To the person making your sandwich, you're just another salami and cheese, a turkey hold the mayo, or the guy who will complain no matter what you make for him. I feel like in this process the human side of things can be lost in translation. That our kid is potentially just another person holding a ticket and waiting in line. Maybe the non educated side of me just doesn't get it, maybe being put against others is successful in this situation, and maybe I'm suppose to just let it all go and leave it to "fate". Truth of the matter is, I just can't bring myself to do this, we have to fight for Dylan, we have to do everything in our power to ensure his health and safety. Just the other day the transplant team informed us that we could hold off on Dylan's labs and go back to the standard protocol of labs every other month (when I say standard they mean based on his post transplant state, his labs having come down a tad, and I assume just reviewing Dylan like everyone else who might be in his situation)...what if we listened? How sick would/could Dylan of gotten? Amber and I decided to take it upon ourselves to do what we felt was right for Dylan and do the tests today. The results today are one that bring a lump to my throat, today Dylan's labs are back up and worse than 2 weeks ago and they're the worst we have ever seen them...ever. Tonight we called Dylan's GI doctor from Kaiser and he's extremely concerned about Dylan and his health. He is someone who speaks to us like family, like a friend, and just another concerned human being for another human being...the world is a better place b/c of Dr. Edward Rich. He advised us to contact Stanford Liver Transplant Team, which we did. The on call doctor said, she would talk to the transplant team in the morning and get back to us when she has some info. So we sit here and wait, we worry, and we wonder if the meal we just ate will be the last one we have at home for awhile...we wonder if Dylan will now need a biopsy of his liver, will he be admitted for IV infusion, is he fighting rejection, is his EBV out of control......and ultimately what is coming next for all of us, and whatever is going on can they fix him and save his liver and stop whatever is going on in his body. The unknown life we live is hard enough, throw in the overwhelming constant unknown health state of your loved one; whom happens to be a child who hasn't even gotten a chance to enjoy life yet and it weighs on you...it weighs like a ton of bricks and one can't help but let it affect your mental state. I ask myself, what and where did I go wrong in life. Was I that bad of a kid, young adult, a boyfriend, a husband, or a father? What did I do that deserves to have my son suffer and be forced to live this life (isn't the pre-transplant and transplant hurdles enough)? Why can't I just take it all away, why can't life just solely shit on me and not on him or Amber anymore. I would take it all away, even if it meant my existence was to not exist anymore. If I was given the choice to let him live a normal life over my life, I would ask where I sign up and then he can start his new life and end mine. We are nervous for what is ahead and can't help but fear where this is going. There is no means of understanding any of this or attempting to rationalize the why's. The hardships, the pain, the fear, the life of just hoping that everything we're doing is what's right...So we're at a crossroads in our lives and look to each other as well as others for strength. Thank you for the continued thoughts and prayers for Dylan, we truly appreciate the support. -Noah Biopsy Canceled... 09/12/2011
 First thing this morning we headed off to Kaiser for the lab work we had been dreading and wanting results for all weekend. Dylan has seemed very tired and had very low energy over the past few days. Dylan has a standing order which makes it easy for us to check labs at any given time if we feel things are off in the slightest. The only issue with the standing order is that most times the labs are almost always sent to the regional lab and it takes just about all day to get any results. This was concerning for us since we needed these results to decide if we were moving forward with the biopsy or not. Well today lucky for us we saw Njoki (Joke-e), Dylan's favorite phlebotomist. After telling her why Dylan was back so soon and what was going on I was pleasantly surprised to see results back for most of his labs just three hours later. At the current moment we are still waiting on several results. One of them being the one of the most important tests, but for now it is safe to say Dylan is NOT dealing with rejection. In one short week Dylan's ALT (a big indicator for liver cell death) has dropped nearly 300 points. Two hundred of those points being in the last three days. There were also two other tests that improved slightly. If Dylan were dealing with rejection these numbers would be increasing and not getting better. We are still waiting for several liver tests to come back. Dylan's GGT (GGT marks inflammation in the bile ducts) being one of these. However, in the mean time Dylan's GI doctors at Stanford feel safe in canceling his biopsy. Sadly, there is not all good news today. The dreaded EBV is back, for those who don't know about EBV, its a virus that most people will have been subjected to by the time they are around 5 years old. Epstein Bar Virus (EBV) is main virus that effects immunocompromised people and is something that is constantly checked in Dylan's lab work. On September 7th Dylan's EBV was negative. This means that Dylan had less than 200 DNA copies in his system. The very next day Dylan's EBV numbers were at 6,000. The doctors feel that this is where the jump in his numbers came from. We have upped Dylan's antiviral medication, Valcyte, in hopes of lowering his numbers. If that does not work we still may end up in the hospital for treatment. It is also still possible that Dylan did have some liver damage from his anaphlyaxis episode, but it's a hard one to prove. The up side to this is that if it were a clotted artery, like we feared, his numbers would again be higher and not lower. We are going to continue to repeat labs weekly until we get his EBV under control and his liver tests return to normal. This may take a long time considering how incredibly high they were. So for now we are in another holding pattern. We are left to wait and see what happens. This waiting period is a little better considering rejection of his newly grafted liver is far from our minds with his current labs. Each time we face a scenario like this it affects Dylan deeply. It is one of the worst parts of having a chronically ill child. It is the one thing we can't protect him from...reality. Dylan's reality is a lifetime of labs, medications and medical procedures. This is something that he will live with forever. My hope is that over time it will become few and far between. I hope even more that as parents Noah and I can provide comfort for our child during these times. -Amber A Game Plan... 09/09/2011
Thank you to everyone for all the prayers and good thoughts. This has really been the second most terrifying moment for us since Dylan's transplant (worst moment). Yesterday we headed to Stanford for labs first thing in the morning. It was a long drive. It seemed much longer than normal to me. Maybe it was the anxiety or the lack of sleep, but it felt like we would never get there. Dylan did well and got to see his usual person there so that helped. After labs we proceeded to the cafeteria for some food as Dylan was hungry. On our way there Dylan over heard me talking to the coordinator about what his labs were like from the day before and what was going to happen if they were bad again. The poor little guy freaked out. He instantly started crying and saying he didn't want to stay in the hospital. We tried to reassure him it would be okay and we told him we didn't know if that would even happen because his labs were not back yet for the doctor to look at. Our efforts failed. Dylan's stomach started to hurt and he starting dry heaving from fear. It was so sad to see. All the anxiety of his last hospital stay flooded back and he was terrified. It took a lot of calming down on our part and some really big long hugs from mom to get him happy again. Dylan has really learned to trust us over the years. He has learned that mom and dad do not lie to him and always tell him what is going on. We try to keep him as involved in the process as we can so he feels like he has some power and say in it all. I think it helps him with the anxiety. At least he doesn't feel like he has no control. We had originally had an appointment set up with an allergist at Stanford for the day. His already existing food allergies have gotten worse since he got his new liver. Some of you may know that Dylan suffered from a terrible bout of anaphlyaxis last Saturday. While at a Stanford football game Dylan ate a hot dog. It said it was a Kosher all beef hot dog so I really wasn't worried as he has eaten them before. After he ate it he told me that his throat was a little itchy. I thought that maybe there was a little milk in the bun and I quickly gave him a dose of Benadryl. Two minutes went by and Dylan said he felt like he was having a hard time breathing. I got out his trusty inhaler and gave him two puffs of his albuterol. Now normally this is all I have to do if Dylan has come in contact with any food that has an allergen in it. Normally he is fine after this and goes on about his business; that was not the case this time. Dylan started sweating and looking pale. His stomach starting hurting and he said he needed to go to the bathroom. I gave him a second dose of benadryl and off we went. It was here things took a turn for the worst. Dylan starting looking gray and got very dizzy. His pulse was faint and thready. He said his heart was racing and pounding. Now from my training as an oral surgery assistant I knew it was low blood pressure. I started to wish I had his epi pen with me, but it was down the hall with Noah and I couldn't leave Dylan alone. It was right at that time that Dylan threw up. The hot dog and all the other contents of his stomach come back up and he started feeling better. It seemed as if the worst was over, but this prompted us to get Dylan into see the allergist sooner than later. We really learned a lot from our appointment with the allergist. I found out that I should be using his epi pen first with all severe allergy and not last like I had always thought. That would have been good to know last week. Dylan had his lung function tests done and despite asthma his whole life Dylan passed with flying colors. We have decided that we are going to be eliminating beef, all nuts and all seafood from his diet in addition to milk which has always been an issue. Dylan seems okay with the decision. I told him it meant he couldn't have his sushi for awhile and he responded with "it's okay mom...I can have an avocado roll". I love my kid...always thinking of the positive. As we were finishing up his appointment we got word about Dylan's labs from the morning draw. So the results were in. I held my breath as the coordinator told me the results over the phone. It seemed as if everything was stable. Some of the numbers dropped slightly (good news) an other numbers didn't budge (not such good news). He didn't have any labs values jump up which is always a good thing. However, this still left us in the dark as to what could be going on. There are a few ideas as to what has caused his bump in numbers. The first idea is some type of viral infection. For me, this seems like a long shot. His labs made a huge jump. Way larger than if it was a viral infection. He has been sick before and a double in numbers is not out of the ordinary, but Dylan's numbers are more than 10 times the norm. He also has negative results for the two main virus', EBV and CMV. The next hypothesis is that during our little man's recent allergy adventures he lost blood flow temporarily to his liver with his low blood pressure. This can cause some cell death and spike his numbers for sure. The damage should repair itself but it will take a long time. The only problem with this idea is that Dylan has a very small hepatic artery, it is incredibly fragile. This is the blood vessel that brings oxygen rich blood to his liver. Being that the artery is so small it has a potential to clot off with no blood flow to it. If this is the case the ONLY option for Dylan would be immediate re-transplant. Dylan would be placed as a status 1A (the highest on the list nationally). We DO NOT want to got there for obvious reasons. The last idea...the dreaded "R" word, yes, rejection. Now this seems terrible when you hear it. However, with liver transplants it is not the end of the world and very treatable. It usually requires a huge dose of IV steroids and more at home, but it can be fixed. Given Dylan's numbers it would be really early rejection so that would make it even easier to treat. So where does that leave us..? The game plan for now is to wait over the weekend and redraw labs on Monday. We have added a couple additional tests in preparation for a surgical biopsy. If there is no improvement in Dylan's labs we will proceed with the biopsy. Needless to say we are all less than thrilled about the idea of doing any of this, but if it needs to be done it will be. Dylan is scheduled for his biopsy on Wednesday morning. Our only goal right now is to get that liver of his as happy as it used to be. So whatever it takes we will do it. It is going to be a very long weekend. We were instructed that if there are any changes in Dylan at all not to hesitate to bring him in for labs/transfer to Stanford. So we will literally be watching him all weekend and staying close to home. We are hopeful that there will be a change in labs be Monday and that all of this will just be a bad dream. Thanks again for all of the continued love and support for Dylan. It truly does help. -Amber prayers needed... 09/07/2011
I had hoped and prayed that I would never have to write an update like this. I had wished that Dylan would be the exception to the rule. Today marks Dylan's seven month anniversary since he received his transplant. Dylan was scheduled to see his GI doctor at Kaiser tomorrow so this morning we ran labs so he would have fresh labs to look at. Some of you may remember from my last post that Dylan was not scheduled for labs until October, but God was watching out for my son yet again. I usually look briefly through the labs when they come through on the website. Before transplant I would click on each link with my eyes shut hoping to open them to good numbers. Since transplant I open them and comment on how perfect they are...not today. Today I was hit by a Mac truck. As I opened his ALT I was in complete shock to see the number more than ten times higher than it should be. I instantly began trying to convince myself that maybe he was just getting sick. I jumped over all the other results waiting to be looked through and went for the GGT. This number is the biggie when it comes to liver health and transplant. Dylan's number today was over five times higher than it usually is. My heart sank. Trying to forget all I know about lab values and what could be causing the jumps in these extremely vital numbers I frantically called Dylan's GI on his personal cell phone. His response was not what I wanted to hear but exactly what I knew he would say. I was told to call Stanford immediately. I got off the phone with Dr. Rich and called the transplant team and spoke the GI on call. I proceeded to tell her what his labs looked like. I mentioned that that his labs have been rock solid since he was discharged and explained the level of panic I was experiencing. We come up with a game plan together. Tomorrow morning Dylan will be having his labs drawn again at Stanford. We will then be seen by the transplant team. If Dylan's labs are not better tomorrow he will be admitted for a biopsy and IV steroids. We are terrified and beside ourselves. I am holding out hope that there is another cause for what is going on. Hoping for a flu, cold or some other issue... anything other than the dreaded word rejection. Please say a prayer for Dylan. Pray for an easy fix. -Amber Preparing for School... 08/23/2011
All his supplies have been bought. He has his new back pack and lunchbox. He has already picked out his outfit for tomorrow. I can't believe it...my little boy is starting first grade. Today's game plan is to sort through all of his old clothes and get his new ones ready. It is quite the task as Dylan has a lot of clothing. He has grown like a weed and nothing from last school year fits him. Pants and shirts are about an inch too short and I am loving every minute of it. He is truly healthy now and it shows. Given Dylan's medical history school supplies and new clothes are not the only thing we have to have for the school year. Yesterday was Dylan's clinic check at Lucile Packard. It had been two months since his last visit. We really wanted to get him in before school started to see if there was any tweaking that needed to be done. Dylan had a full room yesterday. I think with the exception of the surgeons everyone from his transplant team was there. It was really great to see them all again. During the whole process you really form bonds with the team. They have seen you at your lowest and highest points. They ride the rollercoaster with you. Dylan's team has become family. While Dylan entertained everyone Noah and I spoke with the GI doctor. I explained his belly issues from last month and asked what she thought it could be. We all agreed that it was not liver/medication related. I told her I felt it was possibly an allergy. Maybe something new had developed. Dylan has been riddled with food allergies since he was a baby. He has anaphylaxis to dairy and salmon (which is a new allergy) and a slightly less severe allergy to peanuts. I would get him in with an allergist at Kaiser, but it is hard when their area of expertise is NOT transplant and immunosupression. It is one of those things that even though it is unrelated to transplant, transplant still plays a huge role in it all. LPCH will be asking for a referral from Dylan's GI at Kaiser to see their allergists. One fantastic thing about LPCH is that they have some of the most amazing doctors, in ALL fields of medicine. So now we wait... As of today Dylan's liver is extremely happy. All of his blood work is normal. Dylan has grown an amazing two and a half inches in six months. He has gained just about 7 pounds. It is amazing what a healthy liver will do for a kid. Dylan has been moved to clinic visits every four months and labs every two months. I think back to when he was a baby. This time six years ago I was adjusting to life with a BA baby. He was having weekly lab draws. Medicating a two month old was so new to me. Dylan had just had his Kasai a week before. I had no idea what kind of future my little guy would have or if he even had one at all. Now he is transplanted and doing better than anyone could have hoped for. Dylan's future is bright. He will grow up and do amazing things. We still live life one day at a time, but these days each day is so much better!  Dylan hanging out...last day of summer!  Dylan six years ago! -Amber |  Our Journal...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. ArchivesApril 2012 TAGS |
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