Wednesday, December 19, 2012

#19 (CSF infection) shunt replacement...

9:30 - Dr.Bragg just came by; see below for the rest of updates but she'd like to leave the External drain in place for a few days but clamped and this way if I am either unable to handle th new shunt set-up or need back up support we can un-clamp it and have it to also drain while we figure things out. Hopefully we wont need it!
As far as home??? I am unsure right now but reallly hoping Sunday at the latest...
12/19 - 8:30

Dr.Bragg came by yesterday while the Access Team Nurse was re-accessing my Port (supposed to be changed every 6-7 days) and so we talked  but I was a little flustered by the 2 other nurses in here and thought process wasnt exactly up to speed. I did get some info though and she was actually planning to make a few more calls last night regarding the type of valve to use (or maybe not even use one) and so she should stop by this morning or at very least right before surgery to update me.

Surgery is scheduled at 3:05 and I am not sure actually if i'll go to the main Neurosurg. floor (hope so) or be coming back to N-ICU after. The plan is to place the shunt in the mid-thoracic spine and if we place a valve it will also sit in my back (YUCK!) which I dislike very strongly and going to ask Dr.Bragg if there is anyway to go elsewhere with that (side for instance like w the LP shunt) as I cant imagine wearing a swimsuit (she is looking at the smallest ones possible with most amount of drainage so as to be less visible) and it seems like that would be really uncomfortable sitting back or laying down?  It also admittedly creeps me out a little that they will be so close to my spine when placing this shunt and I pray so dearly that there is no narrowing or compression or other issues like we've had with lumbar spine that have to be dealt with but I also know the MRIs ahve shown some issues so im not sure... I think Dr.Bragg would only pick an area that she felt reasonably comfortable she wouldnt have to do any addition 'work'.

The distal part of the shunt will go in to the pleura which is the space lining the lungs; I also am a little worried about this although I know it is our best bet due to absorption issues w stomach and the infection as well as cardiac issues that prevent us from using the heart as a drainage point. I have to double check with Dr.Bragg that she doesnt think the restrictive lung disease will affect absorption of the CSF but at the same time we also just dont know and can only try.   .... If we need to we will place a VPL shunt or some kind of ventricle to -? (unknown drainage pt) shunt if the 1 shunt doesnt do enough on its own. Again we dont know.

The only other thing is my lumbar to former side-valve incision/pathway is swollen and pretty uncomfortable yet from last weeks surgery. I dont know why it is swollen yet but Dr.Bragg's NP said it could ither be CSF leaking (less likely) or just swelling from the shunt removal surgery of which I am unsure why it would be tender and swollen yet. Hopefully quickly; it feels alot like the back end days of spinal surgery healing which I guess to some extent the shunt removal was a back surgery,,

Arrangements are being made for the home antibiotics with a Home health company and the Pharmacy for when I get out; hopefully by the weekend?? Unsure and depends on surgery I guess but we'd really like to still be able to do Christmas cookies on sunday. :)
I updated below about the infectious disease docs yesterday and will update as a whole about the surgery and everything else when feeling up to it.

Infectious Disease stopped by this morning and it was both Beth (NP) and Dr.Stryker armed with lab reports/info which is always fascinating to me.

I doubt I will really get this totally accurate but the test they ran that came back today looks at a more in-depth analysis of the bacteria specifically if there is any nucleic acid growth which there was some but isnt clear what the result means. They will monitor labs for growth for about 8 days after the shunt replacement.

Because they dont know what the result means but the actual lab cultures have been negative since we took the shunts out 7 days ago Dr.Stryker one of 2 ID docs on my case said he didnt see why I shouldnt still get the shunt put in tomorrow which is good news for me and will I think also make Dr.Bragg happy. He just said that they may chose to cont IV antibiotics longer than the original 7 post-op days which start with post-op day 1 Thurs. Beth, the NP will coordinate the home IV treatment with me in which I should be able to do it on my own we just will need to get the supplies and med organized. They also said bc of this un-certain result and the slow growing nature of the bacteria that caused the shunt infections and is at the heart of all this they will have me fup with them on day 8 (a week from Fri) and although he didnt know "how long, longer term" was they wanted to take all precautions and so at the post-op day 8 Appt fup they would chose whether or not to do the longer term antibiotics and fup. Considering I can still get the shunt tomorrow it isnt the worst news and we still may be able to only have to do the 7 days post-op treatment which would be nice.

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