Day 20 In-Patient ... Almost 3 weeks

 I am still in-patient here on the Neurosurgery floor at UW and we have been ttying various different medications over the past few days especially to calm the nerve signals and to get the nerve issues in my mid-back under control before I can go home. We initially upped the Lyrica to 3 times a day and then after emailing my Pain mngmt dr she suggested 2 different possible meds for the spasms and so Dr.Bragg first tried Baclofen. We went with 3 x's a day at 10mgs but then last night while having a very interesting float nurse I apparently had some side effects. I woke up several times and one of the times I guess I walked out of my room and to the hallway where I stood for awhile asleep and when the nurses came and got me they took me back to my room and bed where I guess I fell asleep right away. This morning my day nurse tried waking me up as apparently the NA tried talking to me several times when I was looking right at her but then I would just fall back asleep as if I wasnt really awale (I dont remember any of these encounters really) and my nurse said it took her a while to get me awake. When I finally started to she asked if anything unusual had happened and I initially didnt respond and then sort of began to ask as if I did rememebr sleep walking/whatever it was and but didnt really complete the thought and she said "what sleep walk in the hallway?" and I responded "yah " or something like that but stil really dazed. It took like an hour before I really snapped out of the sleep 'daze'. My nurse and neurosurgeons + her NPs have spent the day trying to figure out what went on ie was it the baclofen or lyrica and how to rememdy the situation. For now they have cut the lyrica and cut the baclofen in 1/2. Headaches are actually pretty decent and I said to Dr.Bragg I really thought once we got the mid-back irritation under control if we could turn the shunt down a further setting that we would be really close to where I felt when we had the lumbar external drain in and I felt so well. Hopefully wel get there soon!

Yesterday (weds) I had the conference call with the individuals that run the Foundation which had asked me if I would be interested in working for them last weekend. The conference call went really well and I am really excited about the job offer. . Unexpectedly the pay is really well and although I would have taken the position even without any kind of pay I think it will be nice to have that extra income for little things or just for saving. I already have been doing this kind of work in a volunteer basis for the past 3+ years and even more so the past 5-6 years and it is very flexible with as many or as little hours as I like.  Right now I am working on  a database collection for upcoming MPS I research and then that will delve further in to specific information regarding the research. It really isnt to hard and more just transfering data from one place to another and taking the time to gather information from many different sources and sites. EEEEYYYY I still cant beleive I was this lucky to get a job offer like this, how did I get sooo lucky!?!?!?!

I have been actually very much jumped in feet fiest with this and spent close to 4 hours putting together information and data regarding mPS I and families and searching different locations from facebook, the MPS Forum, old sites and the Internet for names and informaiton. Generally I have inked the nformation down on paper to have a rough copy and then transfered it all over to an email but breaking the information down by which site I found as well as a few other key thngs. Ive exchanged quite a few emails with one of the individuals running this group and who started gathering the data as she sends me possible contacts and I send her back completed information.  I am enjoyingit!


On tues night as I mentioned I Emailed my Pain Management dr for her advice and she also emailed me back the other night around midnight and then an additional thought Weds morning which I passed on to Dr.Bragg and her NP's to which they came in this morning and said they had gotten the info. Dr.Bragg was also at a Resident/Attending Grand Rounds this a.m and the talk was on Neuropathic pain and GABA receptors. Dr.Bragg was really excited and she and /her NP are talking to Pain Management about some potential ideas including something addt'l with lidocaine (I think through the IV?) and Ketamine through the PCA pump as well as a couple of the ideas my Pain Mngmt dr thought like the Klonopin which is a neuromodulator as well and increases nerve signals to decrease pain.  She also mentioned baclofen and lastly but deep on her favorites it seemed was something to do with flavonoids which ironicaly in thinknig about it I believe flavonoids are in the supplement Genistein being used in some of the MPS pts especially MPS III and in some cases MPS I and II. I am thinking of emailing the dr that did this grand rounds as I am interested in his thoughts on this and MPS nad I have already pulled up his name to look at his research. He is located here at UW-Madison Dept of Anesthesiology.

Please cross your fingers we get this figured out soon as I would so love to go home very soon!!!!
Take care,

Erica