At rounds yesterday morning we met our new HemOnc Dr. who let it slip that we are shying away from the HLH diagnosis. Sean and I tried to hide our shock and wait until the appropriate time to ask questions...but inside I was unbelievably curious! I still don't completely understand what changed their minds. I know Oliver has only received 3 doses of the chemo drug-and they were very small doses-so I can't imagine that was a fair shot at testing how his body was responding. I know there is concern that his liver isn't able to handle the etoposide (chemo) and because of that he hasn't been able to receive the doses on a normal schedule. Whenever you are admitted through the ER and previously an ICU patient you are assigned a 'RISK' nurse. There is a RISK nurse working 24 hours a day and they come by to check on Oliver and assess if he needs to be back in ICU. Yesterday we were asking if the Cancer Care unit is still the best place for Oliver. Sean and I feel that since he's not receiving chemo and he doesn't have cancer there must be another floor that would help us figure out what's going on with him. He isn't sick enough to return to the ICU and the only other floors are surgical and medical. The medical floor is not nearly as clean and isolated as the cancer care unit so it turns out we are exactly in the best place for Oliver. I think the only reason he qualifies to be on the cancer care floor is because he is on a chemo dose of steroids. So if Oliver doesn't have HLH (we still aren't SURE, but we're leaning away from it) what the heck is going on with this sweet baby??? In one of the genetic tests we found out that Oliver is a carrier for a disease called Neimann Pick. In order to have the disease you must have 2 genes; Oliver only has one however there is a chance that the 2nd gene could be blank and therefore allow some of the symptoms to present. I am not at all clear on how this works and we are meeting with the Genetics Dr. early this afternoon. Please continue praying for Oliver...he felt terrible yesterday and didn't even want to be swaddled or have his binky. He seems to be feeling better today and we are extremely thankful for that!!!
I apologize if this post is scattered...so much to tell and only a few minutes to post! Love to all XOXOXO
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