well, yesterdays turn of events proved both stressful yet fruitful. little did I know that most people with spina bifida are allergic to things such as avacado and kiwi and latex and chestnuts. so I tryed her with the new drink mix that is made by fullfill fitness water that was kiwi strawberry flavored. we noted about an hour or so later that she was popping out hives. and then she started to feel as though her throat was closing up. thankfully the home health nurse was here and called for ems straight off....after being in the er for a while... and things having gotten addressed. the doc and the nurse pulled me out to the side and asked how I was holding up and handling all this. and I was honest.. which killed me to do because I have that Tuchuk mentality in rt.. that says I can kick your ass even on a bad day. I told them that I felt like I wasn't getting her enough care.. that I knew there was things that I still was not being able to tackle for her and that to be truthful....I was terrified that she would get hurt while in my home simply because I was not prepared for this. the doctors and nurses then set the ball into motion to find a reason to keep her in the hospital and were successful. KY has this nice little rule that states that you have to be in the hospital 3 days on out of state medicare/medicaid for them to force it to pay for a skilled facility care.
so the ball is moving down the mountain at a steady pace now. they also believe that they have found a mass in her belly and have to do testing for that. there is a broken harrington rod in her back ... there is also an occluded shunt for hydrocephaly, anemia, uti, and now they are dicussing a partial hysterectomy because she bleeds just way too much. the pressure sores are a huge deal as we found new ones already starting.... so she will be in the hospital until they are cleared and then they will place her to a skilled rehab nursing facility to get her wounds healed... then move her to an assisted living facility. I am just hoping this mass they are looking at isn't a new battle.
Shoko to get the full picture please go read the thoughts and prayers post on that board.. it will give you the rest of the story.
thank you family for what you are doing for her and for me right now. the fatigue has set in. RT has ordered me to rest today Because I am just tanked.
Shy
