Posted 9/3/2014 8:33 PM (GMT 0)
Hey-I'm still alive :)
Managed to make it up to DC for a quick overnight trip with a friend and our two boys. Friend drove and the boys had one last hurrah of the summer. We saw a DC United soccer match and our soccer crazy boys LOVED every minute of it.
I'm definitely paying for it, but it was worth it. I'm trying very very hard to get off the TPN. Just to much of a risk for sepsis. I tried to eat on the trip-by eat I mean a bite of banana, 2 bites of a muffin, pretty much enough for a bird. Well, my stomach doesn't agree with my food attempts, so I've been living in the bathroom. Awesome way to spend a day.
Ankle is still painful. I'm stuck in the boot for at least another 3 weeks(4-6weeks total). Then hopefully I can graduate to an air cast/splint.
My Drs down at Duke are working with insurance to approve some meds and then we can get started on another main-line treatment. The plan is to pair IVIG with another IV med. I don't care what drugs are used-we just need to get something started since it can take months to see improvement. Unfortunately, the meds are being used in an "off-label" manner. Even if the answer is no, I'll still get the treatment. It's a research hospital and they are always looking for new treatments, med combos.
Still exhausted. Actually, I've fallen asleep/zoned out many times while typing this response. I have a sleep study nest week. Hopefully we'll get some answers. Right now the thought is that Oxygen levels are dropping too low.
Thanks for asking about me :) Right now I'm just trying to get by day by day. I get tired of posting such negative info. I keep waiting/hoping for something positive.
UGH-took me 40min to type that. WAKE UP!!!