our grandbabies Jonas, Logan and Taylor |
wow, didn't realize I never posted an update. Hannah was on the flagyl for C-diff for 10 days, we restested her and she is still positive. Dr K started her on oral vancomycin friday. They have to do blood levels for the vanco after 48 hours so now she is having bloodwork done on Sunday...thankfully she still has the central line so the nurse can come here to draw it. She is going to draw the other labs too...I am a little concerned that her eyes are puffy gain but the nephrolgist that we saw last doesn't think it has anything to do with her labs...that's the bad part of seeing all the drs in clinic, they all do things differently. Her bms had not been as frequent but now that she is on the vanco they are back and worse again :) today I was going to cath her, she had a big blowout, had to roll her from side to side to clean that one and she had a big sz (while cathing her) and that made her cough and need to be sucitoned...I laughed and told her there was nothing left for her to do at that moment LOL
She was still having more seizures after we came home from the hospital so we changed her phenobarb back to 3 times a day to see if it helps. they had changed it twice a day in the hospital after dialysis. She is stil having some little ones but it's only been 1 week since the phenobarb change.
She has an appt on wed for ortho followup, her nurse and PT are concerned about her tailbone being more prominent since surgery.
I am tired of taking her to the dr, she has been to at least one appt every week since we got home after her spinal fusion stay 12/29...so far no appts the next week :) hopefully it will stay that way :)
She finally got her new wheelchair in feb! After 7 months! It is so much wider because of the battery tray on the back for her suction machine..have to make adjustments on it for hannah houdini puts her feet under the footrests no matter what we do.
in her new chairShe was still having more seizures after we came home from the hospital so we changed her phenobarb back to 3 times a day to see if it helps. they had changed it twice a day in the hospital after dialysis. She is stil having some little ones but it's only been 1 week since the phenobarb change.
She has an appt on wed for ortho followup, her nurse and PT are concerned about her tailbone being more prominent since surgery.
I am tired of taking her to the dr, she has been to at least one appt every week since we got home after her spinal fusion stay 12/29...so far no appts the next week :) hopefully it will stay that way :)
She finally got her new wheelchair in feb! After 7 months! It is so much wider because of the battery tray on the back for her suction machine..have to make adjustments on it for hannah houdini puts her feet under the footrests no matter what we do.
bracelets from 7000 bracelets for hope
Hannah and Jonas
in her new chair
houdini's foot
Hannah in her new chair and her new best friend Malachi in her old one
wearing her jeans for rare disease day |