"The truth is rarely pure and never simple" (Oscar Wilde).
This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder.
Thursday, April 19, 2012
Pictures and CSF rate drain increase
So the news for today which really isnt news is that Dr.Bragg did opt to increase the CSG drain rate every hour from 10cc/hr to 15cc/hr which the nurses I talked to said they most they ever drained was in a male as I think I mentioned yesterday and that was 18cc/hr. I apprently like to build up CSF quickly f we have both this drain working nad the VP working and finally symptom resolution! The nurses have also commented each several times how much faster I drain that 15cc every hr compared to most External lumbar drain pts they have as we get mine drained in a matter of mins and some pts they said they take as long as 20mins for their body to drip out very similar and often lower CSF count per hour! I dont know what that says about my body besides just plain weird!
Actual insertion site and drain/catheter for Lumbar exteral drain
A tie blanket ive been working on here in the hospital for my nephew "bugs"
Initial collection chamber before drained in to bag.
I'll update tomorrow fri when/if I know more about overall timeline. I honestly now that I feel this great (minus no sleep in close to 2 days now) am a little depressed at the thought of having to take out the external lumbar drain and knowing symptoms will return and until we get the actual 2nd shunt placed. Certainly not that I want a 2nd shunt but I cant begin to even explain how nice it to so feel more human!
Thanks for stopping by,