Monday, February 20, 2012

Day 3 post-op, Revision 12?? (since May)

Hi Again, I am here on the neurosurg floor yet and last night the resident on call got permission from Dr.Bragg to re-adjust the shunt valve down a notch. They went from a 2 down to 1.5 and then again this morning when Dr.Bragg came by since it had been about 12 hrs she adjusted the pressure down again to 1.0. She said it takes about 12 hrs to get an accurate assessment of how well a new setting will work but gave me the option of going home today if I felt like it. I talked to the nurse after taking a shower as I figured there wasnt anything I couldnt do at home that isnt being done here.. He thought it would be better to wait atleast till mid-afternoon or so to make sure I handle this new pressure well or to see if the pressure is still to high in which case he would recommend staying and seeing about having it set down to the lowest .5 setting. Since it's only a few hours I am ok with this and will probably take a nap. I slept about 4-5 hrs last night all while sitting propped up with the head of the bed sat up and this really made a difference  I wish I could figure out a way to sleep like this at home! I was able to adjust to get pressure of one hip or the other when needed but still be upright and was well. In-fact I was still 1/2 sleeping when Dr.Bragg came by this morning and so didnt ask her about the IT or anything else. That doesnt much bother me as I can ask her at fup appt. Really the only problem is discomfort/searing type pain directly over the incision/valve area that occurs every 1-2 hrs and last about 15mins otherwise headaches do seem alot better which is fantastic!

My primary insurance case manager called mid-morning to see how I was doing and to give me an update on a change Dean is trying to make with how/where my aldurazyme is shipped from. Right now Dean is contracted through July 1 with AWalgreens Specialty Pharm but they are working to get a specialty phamacy designation themselves so they could receive and ship the aldurazyme diectly from their own Dean-East Pharmacy. This I think would cut down on confusion with shipping as well as I think might make it easier to get aldurazyme here at UW when I am in-pt. They have till July 1 so we will see. Will be nice if they do get it!

I am working to try and get my infusion from today set up for sometime this week but havent heard from my GC tet. My former NorthShore infusion nurse (a CHW employee) can do it tomorrow if I can get approval but I have yet to hear anything so we will see. Otherwise I emailed one of the other infusion nurses to see if she might be able to later this week but it all depends on if CHW will give us permission for a 2nd day just for my infusion.

All for now, nap time,


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