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
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
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