Thursday, May 14, 2015

Infection; Surgery to remove all shunt hardware. Fri. 5/15, MPS Awareness Day!

We've been treating with IV antibiotics this week, after Tues's positive shunt tap result (which was confirmed in another tap and lab test) the antibiotics where switched to one more susceptible to this particular bug.
I haven' felt particularly great so have spent ALOT of time in the recliner I have in my rm., sleeping in this is easier than in the hospital bed. I do have the PCA (patient controlled pain control button) which along w morphine, (longer acting pain med) and the Pain patch I have on daily has helped a lot.
The 1st surgery is scheduled for tomorrow to take out all shunt hardware (2 shunts) and place an External drain to control headaches until we have the CNS infection under control and can replace the shunts. This likely won't be atleast till mid-next wk or as the ID dr. stated "down the road". LOL, hopefully everything heals fairly quickly.
I can't remember for sure but I think they ID drs and Neurosurgery like to wait for 3 days of negative cultures in a row before they schedule surgery to put all hardware back in place.
Infectious Disease just stopped by (they come by daily to in addition to Dr.Bragg) and they believe the fluid collection that is at the base of the VP Shunt is likely part of the infection. They'll obviously do the IV antibiotics but before replacing any hardware said they'll repeat an ultrasound to monitor the CSF collection and make sure it is gone/no residual infection if that is what the fluid is caused by.
At least when over here on D6-4 although it is boring to I know the Nurses and Patient Care Assistants so they help keep it slightly less dull. Several have promised to stop over at the N-ICU to say 'hi' so that is nice atleast.

Sunday School
Unfortunately this Sunday is our last Sunday School class for the yr., I am bummed to be missing it and especially given this was my 1st yr being there on the 1st day! So much for starting and ending the yr.
Some of my kids will be in VBS though 1/2 of my class moves up to the next Teacher (5th/6th grade SS Teacher). I'll of course see some of them in Church to when back. I talked to a couple of the Parents and told them when I am out of here i'll get the kids end of yr gift to them (photo album with pictures from the last 1/2 yr).
I guess God has a reason for everything, will update again sometime after tomorrow's surgery.
International MPS Awareness Day
I did get a text msg from my Genzyme Case Manager (she coordinates Insur. from Genzyme's end) earlier this wk, there is a banner hanging from the top of Genzyme Center's mainsteps (a huge flight of stairs running from ground fl to 1st). Anyways the banner is for Intrn'tl MPS Awareness Day and of 3 of us with MPS I. Neat!
Please wear Purple tmrw for MPS and for myself, I won't be able to given I have surgery so am asking those around me if they will! If I had purple ribbon I'd atleast tie that in my hair after surgery but don't have any. I also have purple ribbon pins at home but not entirely sure where those are or I'd have had my Mom bring some!
Take care,

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