Dr.Bragg, my Neurosurgeon just came by monday morning and looking at potentially weaning PCA pump tomorrow - initially they talked about today but then decided on tomorrow more than likely as Dr.Bragg adjusted the VP shunt back down to the lowest setting (.5) and we all (she, the NP (see below) and myself) expressed concern would having turned down the VP shunt confuse the picture as far as any issues with going off the PCA pump and on to oral meds. I am unsure if we will turn down the LP shunt any more but the VP shunt dial down was un-eventful which is what we like! Generally it takes about 10-12 hours between turning down a shunt and seeing what effect it will really have on me has so about now is when i'd know and so far as said no issues with this change. The good thing with turning down the VP shunt is also that it does not affect my spine i-nerve irritation although the bad thing is, is that we have no where to go with the VP shunt now and any further changes will have to be to the LP shunt. I want to ask them tomorrow if they have any suggestions for sleep (which ironically was so good last week, not sure if I was just so out of it?!) as with the plates in my neck I have for years really ben able to sleep in only 1 or 2 positions and now with the irritation in my mid-spine that further limits sleep positions. I am hoping they will have some suggestions and hoping even further more that the irriration and swelling in mid-spine nerves will go down and away quickly! It will be so nice to walk and type and bend over, etc without noticing the 'tension' (best word I can think of) from mid-spine down to L hip.
As far as getting off the PCA they want to give about 4 hrs at first on oral meds and see how I would tolerate it, ie would it be about equivilant in pain and would I be able to function through any difference while the pain heals. They thought a range of 15-45mgs of short acting med coupled with the pain patch I have on for 7 day periods. My parents want me to come home with them after I get out of the hospital and to let them drive me anywhere (appts, store, etc) - I am unsure as I miss my Apt and definitely prefer to drive myself to appts, etc. I may stay by them for a few days but not give up driving. Since I mo longer drive stick shift I dont see why driving should be an issue with the back surgery and shunt placement. We will see I guess.
Otherwise I have been asked if I would be interested in joining a group that does advocacy for rare disorders and have a conference call on Weds regarding working for this group. I am really excited as ive done collaboratation with the group before regarding research efforts and a really extraordinary effort! I also today came across a FDA Patient Advocacy Rep positions for patients for their disorders for rare diseases and have been working on a new/updated/relevant Resume and Addendum to apply for a position doing this. I think it is just a PRN thing and sounds really near with efforts to be involved with research decisions with the FDA and patients/ representative groups. Cant hurt to apply! The last tiem i applied for any position was over 3 yrs ago for my Leader position with APF so I definitely had some updating to do! In between 3+ years ago ive been invovled in many things but non required actually applying. :)
I was supposed to see Pulmonary today and then Cardiologist on thurs at FMLH and CHW and so rescheduled Pulm and Cardiol. will see when Weds comes ie if I am out-pt will keep it but if still here in-patient will reschedule.
More soon,
Erica
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