CSF Lab growth and re-test for potential shunt infection

I got released from UW Hospital Saturday and my Mom, sister and nephew came to pick me up once my sister got off work. We went out for supper and stopped at a few places.

Last night was pretty rough with headaches anytime I even attempted to semi-prop up either to read or when going to sleep I got  a splitting headache but then it would improve again once I was upright. I ended up falling asleep around 9 and woke again at 11 but fell back asleep sometime after midnight. This morning I was still feeling really tired, almost literally worn out or exhausted so I slept in and planned to miss ERT + go to my other appt in milw which was later in the afternoon. Not long after 9 my neurosurgeons nurse called and she said that a lab culture from weds's. shunt tap in the OR grew out a infection but that it was a possble contaminant. (The shunt tap was to see if the proximal end-the end of the catheter in the brain was working).She asked that I come in either this afternoon or tomorrow (tues). Since I skipped ERT today  I cancelled my other appt due to some other things I really need to try and get done tomorrow from last week. The shunt tap was done by the NP's at UW and they asked that I stick around Madison till they had initial lab results. I got those late this afternoon and so came back home which was good - I didnt expect not to come hom but still I didnt really want to go shopping so basically just went to one of the grocery stores I like in Madison as well as to a trendy shop in the mall looking for christmas gifts. My big whole buy was a cute teddy bear kntted type hat with a pink flower on it for part of my older nieces present. Not to long after that I called back to the nurses and the initial lab result is clear with glucose and other potential infection markers where negative so far. The neurosurgery team will cont to watch the CSF results as they come back for the next 3 days and make sure nothing grows in that time since it took til day 3 on this first lab for the potential infection to grow. Otherwise as long as things continue going well/improving and no problems i'll fup with them in a month  Cross your fingers and say a prayer!!!!

Other appts coming up (this month will be crazy due to some 6 month appt fups and also appts ive had to reschedule from last month. These include Echo and Cardiology appt at Children's in Milw, Audiology at FMLH (also milw), Urology later this week for the bladder stuff - just a fup back at UW. Pain Mngmt dr normal (ha! funny, how did any of this ever become 'normal'??)  1 month fup and probably something else im forgetting. Next week I also go to Philadelphia for the MPS I-investigational study though that will take just a couple hours and i'll see several friends who are coming in from Vancouver and who live in that area. The study is initially just a 1 time thing but because it is promising for those of us with atleast1 of our mutations being a  non-sense type and the drug is oral + may get in to the BBB (blood, brain, barrier) and bones I dont think it can hurt to do it - right now it is simply at the skin biopsy testing so will be awhile before it goes to human studies but non-the-less promising. The 2 families I will see ive met 1 and been friends with the other for several years and so we plan to have supper the night myself and Jenn's family get in and breakfast the next morning with the researchers. I never enjoy flying mostly because of the small space (some airlines/planes wayyy better than others though!) and having to sit still for so long on top of the pressure sensation in the air on head but maybe it will be better head wise this time - can hope! It always makes me incrediby tired.

I'll update when there's something to write on - take care,

Erica