Jost Family Blog

The last few days have been the worst roller coaster ride so far! Rachel is still hanging in there but it's been a rough couple of days. She went into surgery first thing this morning after a horrible night in the ICU. There were some complications because the fluid buildup was so bad so the surgeon had to immediately go back into surgery. She had to have one very big headache!! It was more pressure problems but they have been taken care of for now. Her spinal fluid is draining into a bag outside of her body for a few days to see if that helps. She is sedated right now but she is fighting that! They are trying to keep her still because they put her on a breathing tube just for the day. She can breathe on her own but they want her still and resting for a while. Tomorrow we'll know more about her prognosis so we are praying hard that she will wake up and be doing much better with the pressure being off of her brain. She did have a stroke at some point recently, most likely due to the tumor. They originally thought that she was having seizures inside her brain that we weren't seeing but the scans and EEG are not showing any signs of it. This is really good for Rachel because it means that she does have a fighting chance. We have done what we can for now and it's up to Rachel and God as to what she does from here. We are still hopeful and praying for the best. She is showing a lot of signs that she can hear us and she keeps reaching for the tube in her throat to pull it out. I think the doctors just haven't met a strong willed kiddo like Rach and she is, as always, surprising them. They keep having to knock her out with more meds so she's definitely putting up a fight!