Day -4 Today was a bit more challenging then the previous few have been. Julians appetite declined a great deal for most of the day. He was very tired because it took him a very long time to fall asleep last night, which I believe set the stage for a rough day. He was too tired to eat lunch, and after his nap, he had to have an immunoglobulin infusion. He will likely need these periodically throughout treatment, because this helps to fight infection. He does not have an infection, but they check the levels in his blood, and if they are under a certain level, then he gets an infusion. Prior to the infusion, he is premedicated with several meds, including Benedryl, which made him drowsy once again. He also has to wear the oximeter on his finger for the entire 3+ hour infusion, which was a huge source of conflict initially. The good news is that he did not have a reaction to this infusion, as it can cause some very severe reactions! Thank you for the prayers! He is hanging in there so far, and we have a long way to go! After the infusion was done, Julian had his bath, followed by a dressing change. Poor little guy had a rough day! The dressing change, while unpleasant, went pretty well. Hopefully, he will get to sleep a little earlier tonight and will have a better day again tomorrow. Overall, I cannot complain. Julian is tolerating all of this so far, and for that, I am extremely grateful! Julian has also started Glutamine today to hopefully help a bit to prevent mouth sores, and he has Biotene rinse for the same reason. He dislikes the Biotene, but even if I can get him to rinse with it once or twice a day in addition to swabbing with water or club soda, hopefully we can keep the mouth sores at bay a little bit. Julians appetite picked up a little bit this evening, so that was also reassuring. One more day off of TPN is a win in my book! Thank you all for following Julians story and thinking of him. We really appreciate your support. The Andrews
Posted on: Tue, 14 Oct 2014 02:34:16 +0000
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