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 symptoms 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
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 symptoms 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
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