Phoebe’s sodium rose to an all time high of 171 last night. She is supposed to be at a level of 140. She was severely dehydrated due to the fluid changes that were made in her diet before we left the hospital. She was only receeiving nutrition through her ng tube for 12 hours a night in th ehopes that her appetite and thirst mechanism would kick in and she would nourish herself during the day.

She does great with the eating part, but seems to have completely lost her thirst mechanism in the brain surgery. She will take a sip or two of a drink but refuses to drink more so we often give her a fluid push of water or juice through her ng tube. Apparently yesterday, after several days of being on the new feeding plan, she just got completely dehydrated to a dangerous degree. All day long she was asking for food and never seemed to be satisfied. I think her signals were confused. She knew her body needed something but couldn’t figure out what. She batted away the sippy cup every time it was offered.

I have no idea what this means for the future…that her thirst mechanism is seemingly gone, but I know that I feel total relief that her confusion and changed mental status was not a precursor for sepsis like last time. That was the biggest sinking feeling I’ve ever had…

She will now be moved to the Oncology floor and kept in-patient while they re-regulate her sodium levels and make a new fluid intake plan. The worst part about this, is that she will miss two of her home health therapy consults appointments tomorrow for her physical and speech theapies. We have been trying to set this up for two months and can’t seem to make it happen because she is in and out of the hospital so unexpectedly. She needs t o be working every day towards walking and these delays set her back.

Thank you all for praying…it was a scary night and we’re all glad to be on the other side of it.