Day +39

It has been a few days now so we thought I should post an update. We had a few days of fevers since I last posted and they had been the big issue. My temps would spike around 102+ and always in the early AM hours. I know 102 is not that bad but when you are already in a hospital bed for 10 other things adding heat to things doesn't help. It made it nearly impossible to rest (let alone sleep) with all the creams and lotions all over my body treating some of the graft verses host disease (GVHD). So getting your skin hot and trying to sweat under the stuff puts things on a whole other level. The docs have adjusted my meds and we are happy to say that I have not had a fever in over 24 hours. In fact the docs have made quite a few tweaks to my meds, first off they removed the order for all the lotions (and potions) and second they have changed most of the medicines from IV to oral. I don't want to presume too much here but last time that was the indicator of a ticket home. I am still on TPN and only allowed to drink fluids but we hope to work on that in the coming days. I may have to go home with the TPN. Man, I am starting have some real cravings for solid food, its been 16 days of the TPN stuff. Oh, one more med was removed - the “pain” med I had been on - continous drip of fentanyl- since I got here so it has been interesting to just be cut off, but things have been fine without it. OK time for a nap, thanks everybody for EVERYTHING - talk again soon.

Tony

Day +34 - Tony here again!

No big mile stone or anything today, just an up day. Things are still progressing in the right direction, although seems very slow from my point of view. The biggest thing is that I have some decent usage of my hands and eyes, enough so that I am able to type this post myself. I added two photo's to try and show what my hands have been looking like (my eye's looked about the same but we don’t have photos).  

OK just a rant here. I always knew that there would be a chance I could spend some serious time in the hospital as I went through this process but I just didn’t think how it would happen. I told myself that if I need to stay in then I had tons of things I wanted to do. I would put in a few hours a day of remotely working, read a few books I have been saving up, learn and play a few computer games, research and plan out activities for when I was healthy again. Unfortunately, I don’t think I really could have prepared myself for any of this. Like I said above, things are going in the right direction and I am truly happy for that. Just having some use of my hands and eyes is having a big impact. I know my hospital time of only 35 days total, is nothing in the grand scheme of things but for today, for me, it feels like a lot.

That's enough ranting for now, I am switching back to the positive mode and ready again to capture all the positive vibes (and well wishes) you are all sending, please do keep it up. I know you are all rooting for me and just the knowledge of that helps in ways that words can not describe.

Thanks Everyone!