Friday, December 7, 2012

Infectious Disease, shunt removals, replacements

The Infectious Disease doc stopped by and turns out was same one as on my case last year; she told me they have a pool of pts they get assigned from and she recognized my name and said she wanted to take me. :) I guess if nothing else it's nice that  providers like this who have had me in the past want to have me on their case later on too.

She asked what recommendations Dr.Bragg has suggested and we talked about some of the things where Dr.Bragg suggested and was thinking. She (Bethany, Infect Dis) commented that she had been hoping the neurosurgeons would opt to take out all the hardware and then do an additional 7 days of IV antibiotics (on top of the week-ish that will already have been given) and after 7 days if the Spinal fluid is clear they can replace the shunts but if the infection still surfaces she would recommend they cont another 72 hrs of IV anti-b's, re-testing at the end of each of these 72 hrs and once the infection was gone they could go ahead with surgery. She also said they can do a small amount of the antibiotic directly in to the EVD to help fight the infection. Hopefully the CSF infection will be gone at the end of the 7 days I cant imagine another 3 or more days (testing CSF every 72 hrs once past the 7 day period if not gone). Ugh. Somone. May. Seriously. Need. To. Admit. Me. To. The. Psych. Ward. =/ Sorry to be whiny just need to for a short bit and vent a little although just venting at the situation not about anyone. With the EVD (external ventricular drain aka a catheter that goes directly in to the ventricle in the brain and acts like an externalized shunt to drain to a CSF bag that hangs from an IV bag (similar to this lumbar drain) and has to be 'zeroed' ANY time I move from sitting up, to laying down to standing, walking, etc. So as you can imagine you are virtually stuck in bed other than when a nurse is with you to help. Ugh, yuck!

She did say as did Dr.Bragg that this is a slow growing bug and typically pretty mild but because I had it last year and we did oral antibiotics then for 6 weeks before + exchanged the old shunts for the 1 new shunt in the same surgery and then did oral antibiotics for 7 days after (the spinal fluid was clear of infection at the time both after surgery and after the 7 days of addt'l post-surgery oral antibiotic) that she thinks it will be more aggressive this time and it worries her to have the infection sitting in there in the shunts and CNS now. She also said after asking me about all the symptoms ive had over the past months+ and a bunch of other questions that likely all the somewhat unusual symptoms ive had (and Dr.Bragg also said the same) including the stomach spasms, upper-mid back pain and symptoms with bending my neck (including a different kind of headache and pain) as well as being so tired so much of the time and fever/night sweats here and there are all related to the type of infection and the amount in the CNS. Thankfully bc it is a CNS bug my plates and screws in my neck and Port in my chest are all fine and dont have to be replaced.

The big thing on all our minds is Christmas, can we get this all done and feeling better and home by Christmas? Dr.Bragg keeps talking about it and seems upset she cant guarantee it, the ID dr seems to think we should be able to barring any complications and the nurses seem skeptical. =/ Dr.Bragg and the nurses know best what my last few surgeries have been like and we have numerous things to do in the 2 upcoming surgeries so I just hope so. I am sad to be missing our holiday traditions my Mom, sister and now sister-in-law have done for yrs (baking and decorating cookies, shopping), and some other things. I am really trying not to think of the few weeks out picture but it just being the holidays is a little depressing admittedly. I do have the very vast majority of my Christmas shopping done which is good and a few gifts beig sent to my house but only a couple Xmas cards where mailed and the rest are sitting in the box to be written out yet. Can I just say it again!? Argh!!

I am unsure when the first surgery will be to remove the VP and LP shunts and external drain (part of the VP shunt) but think Dr.Bragg was looking at her schedule for early next week and the I.D doc preferred it be done as soon as possible.
Stay tuned, thanks for stopping by,


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