The week is finally over. All week long I have had Dylan's EBV levels in the back of my head, so when Thursday rolled around I was more than ready to get it over with. We made the two hour trek down to Palo Alto and arrived at our usual time. Unfortunately, we were not the first to get there. There were two people ahead of us and the lab seemed to be short staffed making it an even longer wait. After about a forty five minute wait it was finally Dylan's turn. It amazes me how much Dylan endures. The little guy had not had anything to eat or drink since the night before, he taken from his bed before the sun came up, thrown in a cold car and then driven for two plus hours. Then he has to wait almost another whole hour just to get a needle jabbed into his arm. Not one complaint from him; nothing. He takes it all and just keeps smiling and laughing. I learn so much from him everyday. I know that there are a lot of children like Dylan out there and some who have it far worse but I am sure they are the same way. They just keep smiling and enjoying the life they have. It is a beautiful thing.
After labs were completed and we fed Dylan we made our way to the Stanford side as Noah had another follow up appointment with his surgeon. The surgeon's assistant came into meet with us and go over the results from Noah's gastric swallow study. She let us know that it looked like the medication was working since Noah's results were normal. We had been warned by the doctor last week that the results from this test would not be truly accurate since Noah had already started taking the medication to reverse the issue. Well, she was right. The test did not show anything abnormal. I am certain that this is aggravating to Noah. He still feels terrible and knows there is something wrong but there is never any proof of it but for now he is going to continue taking the medication (as it does help some when he takes it) for awhile longer and see if he can get any more relief from it. The doctor had mentioned that if the medication stops working or it does not continue to get better that he will need an additional surgery. They will go in and attach another portion of his intestines to his stomach to allow for more efficient emptying. I pray it does not come to that as it does not sound like an easy procedure. I guess only time will tell.
Yesterday while waiting for Noah's appointment I noticed that Dylan had a bald spot on his head. At the risk of sounding vain...it made me sick to my stomach. I know this is a new development as he has had two haircuts since transplant and I did not notice it before. Why is my son's hair falling out? He has dealt with so much already and now he has this too. As of right now it is a small spot about the size of a dime. It is hidden pretty well with the rest of his hair, but I know kids can be mean and Dylan is just really sensitive to begin with. It was definitely a question for the transplant team.
It finally came time for Dylan's appointment and answers to all of our questions. It amazes me how much things change from week to week and how there is always something to talk about. The situation for Dylan changes so frequently and so fast that even just seven days later there is something new to go over. I look forward to the day when we have nothing to talk about. First off, Dylan's EBV came down slightly. It is still a positive result but dropped about 700 copies from two weeks ago. This isn't much of a difference but it is not higher which makes me a very happy momma. During the doctor's physical exam he noticed that Dylan's lymph nodes are swollen a bit. This is normal with any viral infection, but the concern is that if it is related to the EBV and he stays chronically infected with it that is can turn into the PTLD or worse lymphoma. I am confident that he is in good hands though and they have a very close eye on Dylan. Dylan's liver tests remain elevated but his GGT (an indicator of rejection/inflammation) has continued to drop with every test. The doctors are very happy with his labs. Even the Prograf dropped some more and is in the range we are looking for. We did ask the doctors about the hair loss and they didn't seem to have much insight on what the cause could be. I however, have done my own research through my fellow liver moms and have found that some of the kids have hair loss and that it does grow back slowly. The best I can explain it is that is similar to the hair loss chemo patients get. I just hope it does not get worse before it gets better.
The biggest news of the day came as a bit of a shock. Dylan's tape on his bile catheter had come loose. We had planned on having them apply more glue to keep it secure for the next three weeks (it is supposed to be in for three months total), but after our coordinator took a look at it she called the surgeon to see if it was okay to remove it early. The surgeon felt that it would be fine to take it out. Dylan did not like the idea of this. He started to protest as he feared it would hurt coming out. He cried with tears and all, but before he knew it she had taken it out. His tears of fear quickly turned into tears of joy and elation. He literally almost jumped off the table he was so excited. I have never seen him do this before, it was hysterical.
Dylan has been moved to clinic every two weeks and labs done weekly at our LOCAL lab! Thank you God...That will make life so much easier. We will start having labs drawn at out local Kaiser and then faxed over to LPCH for clinic the next day. It was encouraging for me that despite the issues with the EBV and labs that the feel confident enough to let him go two weeks between visits. I am thrilled to say the least. Dylan will be able to see his regular phlebotomist, who he loves dearly and he won't have to leave the house before dawn anymore. We saw Dylan's Kaiser GI doctor today. It had been about two months since Dylan has seen him. He said Dylan looked great and that his liver and spleen are both tucked under his ribs like they should be. That is a huge relief to us. It one less thing for us to worry about. Before transplant Dylan's spleen was so big it was at risk for rupture and he was not allowed to play the way he would like to. This happened just in time as Dylan is going back to school on Monday!
-Amber
After labs were completed and we fed Dylan we made our way to the Stanford side as Noah had another follow up appointment with his surgeon. The surgeon's assistant came into meet with us and go over the results from Noah's gastric swallow study. She let us know that it looked like the medication was working since Noah's results were normal. We had been warned by the doctor last week that the results from this test would not be truly accurate since Noah had already started taking the medication to reverse the issue. Well, she was right. The test did not show anything abnormal. I am certain that this is aggravating to Noah. He still feels terrible and knows there is something wrong but there is never any proof of it but for now he is going to continue taking the medication (as it does help some when he takes it) for awhile longer and see if he can get any more relief from it. The doctor had mentioned that if the medication stops working or it does not continue to get better that he will need an additional surgery. They will go in and attach another portion of his intestines to his stomach to allow for more efficient emptying. I pray it does not come to that as it does not sound like an easy procedure. I guess only time will tell.
Yesterday while waiting for Noah's appointment I noticed that Dylan had a bald spot on his head. At the risk of sounding vain...it made me sick to my stomach. I know this is a new development as he has had two haircuts since transplant and I did not notice it before. Why is my son's hair falling out? He has dealt with so much already and now he has this too. As of right now it is a small spot about the size of a dime. It is hidden pretty well with the rest of his hair, but I know kids can be mean and Dylan is just really sensitive to begin with. It was definitely a question for the transplant team.
It finally came time for Dylan's appointment and answers to all of our questions. It amazes me how much things change from week to week and how there is always something to talk about. The situation for Dylan changes so frequently and so fast that even just seven days later there is something new to go over. I look forward to the day when we have nothing to talk about. First off, Dylan's EBV came down slightly. It is still a positive result but dropped about 700 copies from two weeks ago. This isn't much of a difference but it is not higher which makes me a very happy momma. During the doctor's physical exam he noticed that Dylan's lymph nodes are swollen a bit. This is normal with any viral infection, but the concern is that if it is related to the EBV and he stays chronically infected with it that is can turn into the PTLD or worse lymphoma. I am confident that he is in good hands though and they have a very close eye on Dylan. Dylan's liver tests remain elevated but his GGT (an indicator of rejection/inflammation) has continued to drop with every test. The doctors are very happy with his labs. Even the Prograf dropped some more and is in the range we are looking for. We did ask the doctors about the hair loss and they didn't seem to have much insight on what the cause could be. I however, have done my own research through my fellow liver moms and have found that some of the kids have hair loss and that it does grow back slowly. The best I can explain it is that is similar to the hair loss chemo patients get. I just hope it does not get worse before it gets better.
The biggest news of the day came as a bit of a shock. Dylan's tape on his bile catheter had come loose. We had planned on having them apply more glue to keep it secure for the next three weeks (it is supposed to be in for three months total), but after our coordinator took a look at it she called the surgeon to see if it was okay to remove it early. The surgeon felt that it would be fine to take it out. Dylan did not like the idea of this. He started to protest as he feared it would hurt coming out. He cried with tears and all, but before he knew it she had taken it out. His tears of fear quickly turned into tears of joy and elation. He literally almost jumped off the table he was so excited. I have never seen him do this before, it was hysterical.
Dylan has been moved to clinic every two weeks and labs done weekly at our LOCAL lab! Thank you God...That will make life so much easier. We will start having labs drawn at out local Kaiser and then faxed over to LPCH for clinic the next day. It was encouraging for me that despite the issues with the EBV and labs that the feel confident enough to let him go two weeks between visits. I am thrilled to say the least. Dylan will be able to see his regular phlebotomist, who he loves dearly and he won't have to leave the house before dawn anymore. We saw Dylan's Kaiser GI doctor today. It had been about two months since Dylan has seen him. He said Dylan looked great and that his liver and spleen are both tucked under his ribs like they should be. That is a huge relief to us. It one less thing for us to worry about. Before transplant Dylan's spleen was so big it was at risk for rupture and he was not allowed to play the way he would like to. This happened just in time as Dylan is going back to school on Monday!
-Amber
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