Monday 6/6/11 re-updated
Just a quick note to say that I now apparently have a UTI and am still here in-patient - maybe tomorrow? My Nrsgn has been talking to her colleague who ironically I saw 1x initially a few years ago and whom I did not have a good visit with due to his thinking I was there for the wrong reasons. (II was already being followed by pain mngmt but bc I was so sick the day I saw him w/headaches/nausea he accused me of making up my symptoms and so I just walked out and never went back and finding my now Nesgn Dr.Bragg was pure coincidence through the adult Nrsgn I initially saw at UW and who recommended her).
Anyways Dr.Bragg has been running my complications past him to get his advice which he probably doesnt even remember me and regardless I am really happy she is so willing to consult with other doctors to try and make the best medical decisions for me!
Tuesday is my nephews 5th birthday so I really, really, REALLY want to be out!!! I am praying and my Neurosurgeon tends to stop arround in the mornings so will know then I suppose. PT and OT came around and was somewhat helpful I think really it is you arent going to know how things affect you until you are home and using daily living things and trying to adjust! So we will see..... Nrsgn has cont'd talking to Urology apparently and working this out.
I also spoke with Genetics Counselor and she got the ok for me to do my infusion on a different day so I didnt have to miss 2 weeks in a row. Right now it's just a matter of which day it will be bc I am still in-patient here and wihch day the 2 nurses who've said they'd be willing to do it and which decides to do it. Will keep updated as usual.
Feeling a bit out of sorts this morning - slept about 4 o5 5 hours last night and about a 2 hour nap yesterday afternoon after my family left. I think part of what I need is a night of 8-9-10 hours of sleep with little interruption and not that the staff here has even been waking me up thankfully I think they know I am sleeping so poorly that when I do sleep they just wait on 4 hour checks and meds. I am grateful for that.
My Neurosurgeon just stopped by today and said although we where shooting for getting released today she doesnt want to guarantee it yet and we should just wait and see how it goes. She spoke with urology yesterday and they said that they dont typically start medications until 2 weeks after a nerve injury so that it can give plenty of time for the body to try and heal itself re loss of sensation and inability to just go and holding after having gone. She is working with them to set up consults and testing likely when I am out-pt but she and the residents did say they may do some of it today to. She talked again definitively about having the nurses teach me to straight cath bc of the importance of not having free standing urine left in the bladder after having gone to the bathroom - and that this to will likely be a short term problem but we just cant say how long =/ - she just doesnt want anything to occur in this period of bladder not quite working right and when it is back to a more normal. As far as PT/OT she wants them to really focus on the whole ADL thing bathing/showering (she did say id have to keep the incisions covered), stairs, dressing and all of the other little things that a perosn takes for granted and might not think of. As well she wants to get this coordinated for at home re these therapies and assistance devices. Feeling a little daunted by it all but I know day to day is the best way to look at it.
As for ERT I talked to the genetics clinic about trying to get it done a later day this week, we will see.
Will update when I know more later,
Erica
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