Shining A Little Light on The Subject Matter Of My Rare Diseases

Well, It seems like I've kept everyone in the dark as to what has been going on! I'll try to keep a coherent thought going on here, but just know you are forewarned. I had chemo on Friday and it was really no big deal. My doctor ordered a ton more fluids to try and stay ahead of all the problems I was having the first time around. It seemed to work like a charm. I woke up and ate some yogurt and milk and then had some broccoli and potato pureed soup. It had become a staple. Well, I did pretty well. I ended up staying in bed all day on Sunday quite nauseous and sleeping and popping pills as I could. I was up for most of the night Sunday night with my bucket, unable to keep anything down, including water. 

So, Monday morning we called to go in to the oncology unit for fluids (my bloodwork showed I was barely dehydrated so it wasn't that!) So, I got some zofran, ativan, decadron, and fluids. After all that I still wasn't feeling well, so they went ahead and admitted me. I again had my stomach pumped (it's still being pumped as I write this). I guess it was later Monday that I had a bunch more tests run and I was woken up on Tuesday with the results??? Or maybe they did all the testing on Tuesday? Or Monday afternoon at some point saying they needed to run more tests to confirm if it really is my SMA again, because usually when they're certain they're right they're usually wrong, but they are definitely right this time. I apparently have this huge blockage on my small intestines.  So, long story short for the night, I haven't been able to eat anything my mouth since Monday except liquids because they get pumped right back out...which means yes, I have a NG tube in my nose to my stomach.

On Monday I will be having surgery to correct the problem by moving my small intestines out of the way and by putting a feeding tube in my stomach and my small intestines to make me gain weight faster. 

But regardless, I'll finish the story tomorrow, it's bed time now!!!