Surgery with Dr.Bragg to take out the current TPL Codman programmable valve and replace it with a smaller (more in-line with the cathether) valve is scheduled for March 28th. I could have likely done sooner but have an assortment of other things in the next few weeks which I wanted to keep and not miss. Pre-op atleast at this point is this Fri (Madison), and I see Cardiology next Thurs which was someone Dr.Bragg wanted their ok to go ahead with surgery (is just a fup from last month, see more below).
Dr.Bragg's Secretary wasn't sure and I didn't think to ask Dr.Bragg last week if I will be admitted the morning of surgery the 28th or is Dr.Bragg doing a pre-admit the day before as she has these last 2 surgeries (due to INR, blood thinner level mngmt). She was going to call me back on Weds with that info and not a big deal either way. I might be able to skip the pre-op appt if it is a pre-admit which I guess each has it's pro's and cons.. The pre-admit con being it's typically a long-ish afternoon of testing but then there is wide free time to in-between. I don't know, don't really want to be there any longer than necessary so we'll see what Dr.Bragg has to say.
I talked to Cardiology per their wishes regarding what Heart rate was a week after upping the Nadolol (mid-90's, upper 80's at ERT today) and did the repeat INR which was within range again at 2.6 (range is 2.0-3.0). Nancy (NP) said she talked to Dr.Earing to let him know the HR hadn't really improved much and he told her he needed to think about it some. She seemed a little baffled by his initial response per what she told me but he also can go onto the computer and look at the inputted infusion vitals to see HR if he so desired, she was going to talk to him more in the morning on patient rounds and call me after with whatever they decide. I am truly hoping it isn't increase the Nadolol (beta blocker) dose AGAIN! =/?
Otherwise I see Neuro-Opthalmology for 1 yr fup next Tues and the following week Weds-Fri
I fly to Mn for a few short days for the continuing MPS I cognitive studies (NP Testing, fMRI, and 1 or 2 other things they have added on related to their studies.) Their Neurosurgeon then will reset both shunts after. It looks like i'll have lunch w a good friend of mine from Genzyme during that last day though so that always makes it worthwhile and 'better'! =)
Fri night I had dinner w friends and Sat Zan spent all day and part of Sunday with me which was a lot of fun, I really enjoy having him here and he is so fun to listen to talk about various things he has learned or is interested in! A bundle of knowledge!!
Tonight at Church we had book club (long day after ERT in Milw!) and later in the week 4 of us are going to a fundraiser Fri night (for local beekeepers, not entirely sure what it is for) and then the same group of us bowling Sat night for Joan and I birthdays. Very fun! =)
I teach Sunday School this Sun and the following Sunday so turning the clocks ahead this wk though nice in reality will be a bummer losing that hour of sleep!
Stay tuned for updates, may be till next week unless something changes or worth updating.
Thanks for stopping by,
Erica
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