Wow...it has been awhile since our last update. Life in the Levy world has been pretty crazy. To say that Dylan has been keeping me busy would be an understatement. Just in July we were at the doctor at least eights times with about 4 different labs draws and procedures. I should mention that most of this was actually not for his liver. Dylan's liver is VERY happy in its new home. If you were to look at just his lab work you would never suspect he had a liver transplant just six months ago. So what has been going on? Well to be honest no one really knows.
It started at the beginning of July. Dylan had GI symptoms suggestive of the stomach flu. He had one episode of vomiting and then that was followed by painful stomach cramps and diarrhea. It is hard to imagine what goes through my mind when this happens. Yes, I realize that Dylan will get normal bugs and be a normal kid, this is what we have always wanted, but the what ifs are gut wrenching. They play games on my mind. They literally drive me crazy. I have always said I would prefer a window into Dylan's abdomen so I could just look in and SEE everything with his liver is fine. Well that is not the case...there is no window, no way of just knowing it is a normal kid bug and not something much, much more. Dylan's symptoms went away about two days later. It seemed to have passed without a trip to the ER or doctors office, but I should know by now nothing works out that way for Dylan. Just as quickly as it all went away it was back. My poor little guy was in pain, scared and on the toilet. I always keep my composure in front of Dylan. I make it a point that he never knows the worried thoughts that are going through my mind. I tell him he is fine and reassure him it is nothing serious. As soon as I was able to, I was on the phone and sending emails. Dylan's GI doctor told me he wanted him seen ASAP and to have labs drawn and stool studies ran to rule out any possible parasites, bacterial infections and to make sure it was not liver related. Just another moment in our lives when we are reminded how fragile his little system is.
It is almost like they say on the show Cheers, "where everybody knows your name". We walk into the Kaiser near our home and it doesn't matter where we are in the building, they all know Dylan and me by name. I have learned the ropes there and figured out the quickest most efficient way to be seen and have problems dealt with. I have a back line number to Dylan's GI, regular pediatrician, the charge nurse, lab and the pharmacy. For those of you who know Kaiser's system there is a lot of automated services, leaving messages with call centers, and advice lines. I guess one perk to having a chronically ill child is not having to jump through hoops to be seen. So that being said with one phone call to our dear friend Rita, the charge nurse, Dylan had labs placed on order for STAT processing, orders for stool studies placed, and an appointment. Took ten minutes to get it set up and we were off for a fun filled day at Kaiser, all with my fingers crossed and holding my breath.
Dylan's doctor said he looked okay and felt his stomach and everything felt fine too. His labs were back and everything looked great. It would take a few days for the stools studies to come back, but they said he was just having a hard time shaking a GI bug and to keep his diet bland for a few days to see if that helped. It wasn't long before Dylan started a new routine of on and off stomach problems (literally on and off the toilet). After about three weeks of this we hit a low point. Dylan ran to the bathroom and was crying out in pain on the toilet. He asked me if he was going to die...that was it. I made a frantic phone call to the doctor and had an appointment for Dylan set up for an hour later. All of the stool studies showed that Dylan was a healthy kid. There were some white blood cells, but everything else looked great. We still have no idea what the cause of all of this was, but for now he seems better (not saying too loud, he may hear me).
When you have a "sick" kid you get used to the ups and downs. At any given moment your whole world can be shaken up, turned upside down and just when you think it is safe to take a deep breath it happens all over again. Every month Dylan goes in for an antimicrobial infusion. The medication is to help prevent a very serious type of pneumonia (PCP). This particular pneumonia occurs most frequently in people who have received transplants and are immunosupressed. We had made our way into the treatment room to start the infusion. Everything went fine. IV went in without an issue and two hours later we went home. It was later that night that things got a little interesting. Dylan's right arm had swelled up and hives had developed all over his arm. Now my first thought was, what did this kid eat? After inspecting his body for other hives I noticed it was just his right arm. There were no hives anywhere else on his body. It just so happened that Dylan's IV was placed in that exact arm. I gave Dylan a large dose of Benadryl and a couple puffs of his inhaler and we went to bed. I had a feeling that tomorrow would bring more visits to our home away from home.
I made a phone call first thing in the morning. It being Friday I knew I wanted answers before the weekend. I asked to leave a message for Dylan's GI who was not in the office yet, but they insisted he be seen instead. It was important to make sure he wasn't having heart or breathing issues. Now I knew that was not the case, but in we went. It was just as I suspected. Dylan was now allergic to his Pentamidine. How on earth will we get around this? He has now used up all options at preventing this terrible pneumonia since he is allergic to the Septra most commonly used. I immediately called Stanford to inform them and to see what our next step was. It was not an emergency as the medication gives thirty days of protection, but we needed to come up with a new game plan nonetheless. It is rare that good comes from issues like new allergies to vital medication, but Dylan lucked out this time. The verdict...no more Pentamidine and NOTHING to replace it. Dylan literally jumped up and down after hearing the news. He was thrilled!! No more monthly IV's, no more waiting for hours for it to infuse. It was another step to being normal. Given that he is now six months post transplant and his levels of immunosupression are now pretty low his risk for the pneumonia has gone down dramatically. That puts Dylan at just two medications. That's it, only two. I love knowing soon enough he will be down to just the Prograf and his life will be that much easier.
It started at the beginning of July. Dylan had GI symptoms suggestive of the stomach flu. He had one episode of vomiting and then that was followed by painful stomach cramps and diarrhea. It is hard to imagine what goes through my mind when this happens. Yes, I realize that Dylan will get normal bugs and be a normal kid, this is what we have always wanted, but the what ifs are gut wrenching. They play games on my mind. They literally drive me crazy. I have always said I would prefer a window into Dylan's abdomen so I could just look in and SEE everything with his liver is fine. Well that is not the case...there is no window, no way of just knowing it is a normal kid bug and not something much, much more. Dylan's symptoms went away about two days later. It seemed to have passed without a trip to the ER or doctors office, but I should know by now nothing works out that way for Dylan. Just as quickly as it all went away it was back. My poor little guy was in pain, scared and on the toilet. I always keep my composure in front of Dylan. I make it a point that he never knows the worried thoughts that are going through my mind. I tell him he is fine and reassure him it is nothing serious. As soon as I was able to, I was on the phone and sending emails. Dylan's GI doctor told me he wanted him seen ASAP and to have labs drawn and stool studies ran to rule out any possible parasites, bacterial infections and to make sure it was not liver related. Just another moment in our lives when we are reminded how fragile his little system is.
It is almost like they say on the show Cheers, "where everybody knows your name". We walk into the Kaiser near our home and it doesn't matter where we are in the building, they all know Dylan and me by name. I have learned the ropes there and figured out the quickest most efficient way to be seen and have problems dealt with. I have a back line number to Dylan's GI, regular pediatrician, the charge nurse, lab and the pharmacy. For those of you who know Kaiser's system there is a lot of automated services, leaving messages with call centers, and advice lines. I guess one perk to having a chronically ill child is not having to jump through hoops to be seen. So that being said with one phone call to our dear friend Rita, the charge nurse, Dylan had labs placed on order for STAT processing, orders for stool studies placed, and an appointment. Took ten minutes to get it set up and we were off for a fun filled day at Kaiser, all with my fingers crossed and holding my breath.
Dylan's doctor said he looked okay and felt his stomach and everything felt fine too. His labs were back and everything looked great. It would take a few days for the stools studies to come back, but they said he was just having a hard time shaking a GI bug and to keep his diet bland for a few days to see if that helped. It wasn't long before Dylan started a new routine of on and off stomach problems (literally on and off the toilet). After about three weeks of this we hit a low point. Dylan ran to the bathroom and was crying out in pain on the toilet. He asked me if he was going to die...that was it. I made a frantic phone call to the doctor and had an appointment for Dylan set up for an hour later. All of the stool studies showed that Dylan was a healthy kid. There were some white blood cells, but everything else looked great. We still have no idea what the cause of all of this was, but for now he seems better (not saying too loud, he may hear me).
When you have a "sick" kid you get used to the ups and downs. At any given moment your whole world can be shaken up, turned upside down and just when you think it is safe to take a deep breath it happens all over again. Every month Dylan goes in for an antimicrobial infusion. The medication is to help prevent a very serious type of pneumonia (PCP). This particular pneumonia occurs most frequently in people who have received transplants and are immunosupressed. We had made our way into the treatment room to start the infusion. Everything went fine. IV went in without an issue and two hours later we went home. It was later that night that things got a little interesting. Dylan's right arm had swelled up and hives had developed all over his arm. Now my first thought was, what did this kid eat? After inspecting his body for other hives I noticed it was just his right arm. There were no hives anywhere else on his body. It just so happened that Dylan's IV was placed in that exact arm. I gave Dylan a large dose of Benadryl and a couple puffs of his inhaler and we went to bed. I had a feeling that tomorrow would bring more visits to our home away from home.
I made a phone call first thing in the morning. It being Friday I knew I wanted answers before the weekend. I asked to leave a message for Dylan's GI who was not in the office yet, but they insisted he be seen instead. It was important to make sure he wasn't having heart or breathing issues. Now I knew that was not the case, but in we went. It was just as I suspected. Dylan was now allergic to his Pentamidine. How on earth will we get around this? He has now used up all options at preventing this terrible pneumonia since he is allergic to the Septra most commonly used. I immediately called Stanford to inform them and to see what our next step was. It was not an emergency as the medication gives thirty days of protection, but we needed to come up with a new game plan nonetheless. It is rare that good comes from issues like new allergies to vital medication, but Dylan lucked out this time. The verdict...no more Pentamidine and NOTHING to replace it. Dylan literally jumped up and down after hearing the news. He was thrilled!! No more monthly IV's, no more waiting for hours for it to infuse. It was another step to being normal. Given that he is now six months post transplant and his levels of immunosupression are now pretty low his risk for the pneumonia has gone down dramatically. That puts Dylan at just two medications. That's it, only two. I love knowing soon enough he will be down to just the Prograf and his life will be that much easier.
So we have some very exciting news! For those of you who do not know yet. We have found out that we are expecting a baby GIRL!!! I am currently just about 19 weeks along. So far everything looks great the baby is growing well and healthy. Dylan has taken awhile to get used to having a sister and not the brother he had hoped for, but we are all thrilled. Noah is a little weary due to the fact that I love purchasing baby clothes and even more so when they are pink and girly. I just know she will be a perfect addition to our family. I am even more ecxited to meet her now. Dylan has come up with a name. He wants to name his sister Izabella (one of the characters from his favorite show). We are still throwing around middle names, but he is dead set on the first name.
It is amazing to me how quicly life can change. Just a year ago Dylan was starting school for the first time. He was no where near having a transplant and his health was in our eyes stable. Having other children had been nothing but a dream. In just a week and a half he will be starting the first grade with a new liver, completly healthy and a baby sister on her way. I am blessed to be where we are now. It is always a miricle to me to see God's plan start to unfold. I have a feeling that 2011 is going to be a great year. Thank you for taking the time to always read up on Dylan and the rest of us. It means so much to us to know we have so many people thinking and praying for him.
-Amber
It is amazing to me how quicly life can change. Just a year ago Dylan was starting school for the first time. He was no where near having a transplant and his health was in our eyes stable. Having other children had been nothing but a dream. In just a week and a half he will be starting the first grade with a new liver, completly healthy and a baby sister on her way. I am blessed to be where we are now. It is always a miricle to me to see God's plan start to unfold. I have a feeling that 2011 is going to be a great year. Thank you for taking the time to always read up on Dylan and the rest of us. It means so much to us to know we have so many people thinking and praying for him.
-Amber
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