Friday, November 20, 2015

Facebook update [pic] from Help Anton

Day +236 Today was a pretty fun day. We went to clinic to have labs drawn, then to physical therapy, then back to clinic for a pentamidine neb (once a month antibiotic), then to the bmt floor to see Anton's best friend Kendall, we also got to see several of our favorite doctors and nurses which was fun. Anton is tolerating his G-tubes feeds better and eating more by mouth so we are slowly working on getting him off of TPN (IV nutrition) . They stopped his lipids today and he now gets TPN for 12 hours a day instead of 14! Small steps but hopefully soon we can get rid of TPN for good. Once we got back to RMH we ate dinner in our room then it was off to bingo :) Bingo at RMH is like Christmas only it happens every single week. It seems pretty unbelievable that we are still out of the hospital. I feel like we are waiting for the ground to drop out all while trying to enjoy hanging as a family. I keep asking what all needs to happen for us to be able to go home (TX home). I don't have an exact answer but I do know he needs to be off of TPN, can't have graft vs host, and needs to not be admitted to the hospital all the time with fevers. I think it's just going to take time for him to get stronger and stronger. My guess is we will get to go home around 1 year post bmt (that's totally a guess and not based off of anything a doctor told me). Thanks for all the love and support! via Help Anton November 20, 2015 at 12:00AM

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