I havent talked to Dr.Bragg yet today but this morning a couple of the Residents had to come and re-change the connector/connection between the VP shunt catheter (smaller than a straw and closer to size of a coffee stir straw) and the IV catheter as I accidentaly ran over the line with the IV pole and disconnected the 2 parts this morning.(the whole drain hangs from level of IV pump and down to just below the wheels of the pole and then runs up to the shunt catheter which is externalized at the abdomen level) Anyways the Residents had to come change the IV line, catheters, drain and dressings + re-hook everything up and tie the pieces back to my stomach. The one Resident is who finally told me he had been working on scheduling surgery for Weds and would be after noon as they have a clinic in the morning.
When I talked to Infectious Disease over the weekend they where saying expect 7 days minimum and possibly 10-11 days with the External drain to make sure they got clear CSF cultures and got the infection cleared up after removing the shunts and hardware. My actual ID doc today said she wasnt opposed to the 72 hrs Dr.Bragg was shooting for as long as the cultures came back negative and she would work out a more final plan with Dr.Bragg. The Resident said they are planning for surgery this Weds and then replace everything next Tues or Weds and should still be able to get out in time for Xmas as long as all goes well although no guarantees which is what they've all said. I am curious why Dr.Bragg apparently changed her mind on the length of the EVD (external drain) and antibiotics before putting everything back.
The Resident did say when I asked why we had to do a week of pre-surgery IV antibiotics that it is better when they can do that as it helps 'prep' the body (I think that was it) and then they have a start once they get the hardware out.
****** Dr.Bragg just stopped by in the middle of typing this and she also talked to ID docs and what they want is 7 days total of infection free antibiotics but as far as putting the shunts back in once we get a clear (no infection result) then the "clock" starts ticking for the 72 hrs of testing ID wants (so say we put the shunts in Weds and on Thurs get a CSF result that is negative then they test for 3 consecutive days to make sure the CSF stays negative before they will 'ok' putting the shunts back in..). I also asked Dr.Bragg if she thought she would put the shunts back in the same spot or elsewhere and she said she has been thinking about this and isnt sure yet what she will do but wants to think about it some more since we do have time. She mentioned she is considering could she put the VP shunt in but on the L side but then she was thinking about the Port being there and so she wasnt sure what she would do with this yet I know she also mentioned maybe moving the tip to the ventricle at the back of my head. For the LP shunt she had thought she would place it higher (above lumbar spine) but I am unsure there to would she route it around the same side and in to peritoneum or can it be tunneled distally to another drainage point? I dont know but going to try to remember to ask tomorrow.
Hopefully the cultures will be clear in time to replace both shunts next week Tues or Weds as planned and hopefully that surgery wont be to hard (no un-expected spine surgeries for instance) and hopefully with God's grace I will not go to stir crazy (plain crazy!?) during the next week in the Neuro-ICU.
On a different but related note my Insurance Case Manager and the Neurosurgery fl Pharmacist have been co-ordinating getting my weekly ERT drug shipped to the hospital (vs my infusion clinic in another city) and looks as if that will get here tmrw. For the time being they just have 2 wks coming and if needed the Pharmacist will order a 3rd wk but God willing we wont need that!
Stayed tuned, thanks for stopping by and will update again soon.
Erica
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