Tuesday, March 26, 2013

2:30 - Dr.Bragg stopped by and asked how the shunt adjustment is going (see below) which it helped a small amount (she commented a mm in the grand scheme of shunt adjustments which is what it feels like ie helped a little but no where near enough) and then said we have other adjustments and changes we can make - we got to talking about my nephew's parents and her step-daughter and so I didnt ask her what she might be thinking but atleast it seems she might not be giving up? I know I need to trust her and I do but sometimes it just is hard I guess to fully put your faith in someone when you struggle so mightily with something so much and they help but you also know they only see you a % of the time and really can prbably only do so much? I dont really know... As ive written before I really like her so it's just a me getting past, past exeriences with former providers and believing in her + in truth learning to do a better job all of the time asking questions, getting details... Sometimes I guess I am just tired and not always the best memory either, notes dont always help either bc then those distract from the conversation at hand (hard to explain that one).   Little by little over the years ive gotten better though and I actually do think her and I make a good team. ...

Earlier in the day...
I talk about this alot and im sure it gets old reading about it (but its my blog so I guess I get to write about anything I like!?)  but I am headed home today and while you think you prepare yourself to probably only feel somewhat better after a surgery such as this one (as our hope was at the least to improve symptoms some, to buy us time)  I dont think you ever truly get used to 'another surgery, another in-complete fix' once it comes to discharge day because as much as you want to go home and look fwd to the comforts and quiet of your own space away from everyone you also wish you where going home with that elusive, magic answer feeling better, feeling more whole as if you could find the carrot dangling at the end of the stick..  Ive not talked to Dr.Bragg today yet and am unsure if she is stopping by before I get out but also am doing ERT this afternoon which will take 4 or so hours and slated to start around 12:30 so maybe she will come by this afternoon? I hope?  If nothing else its nice to be able to talk to her and talk about our fup and future plan (whatever that may or may not be) before going home after being in-patient.  I tihnk there are some left-over 'un-knowns' from this stay including what caused the incredible fluid retention and feet swelling + why do my feet still feel some tingly and why is the TPL area of my back so uncomfortable and last why is vision so ridiculous? Who knows but is very frustrating!

Dr.Bragg is on vacation next week so if I dont talk to her today I wont see her till the 11th in clinic and am guessing maybe we would adjust the new VP shunt valve down 1 further notch to 40 (it can go to 30 but we likely wont do that, but am unsure.) We have the TPL shunt set now at 1.0 which seems to help keep it open vs having it set at it's lowest at .5 and likely will keep the VP shunt set at 40 if we did go down further.  I am really unsure of any thing related to the headaches and symptoms right now. Like ive always said uncertainty is never my strong suite and MPS is a whole lot of crap uncertainty. Hate IT!

I made my reservations for Boston and am flying in Sat afternoon in time for a dinner w the Rare Disease team and fellow patients Sat night + then we are all doing a duck tour of Boston Sunday followed by a breakfast on Monday morning and the Marathon + I chose to fly home right away monday night. My friends I am staying with said I should stay till Tues and I sort of wish I would have now as it wont leave alot of time (I could maybe change my flight to Tues) but over all should be a really fun trip and I love Boston so am really excited! I need something like that to look fwd to!
                                              Shirt for the Marathon - the whole team has them.

Will update if or when I know something,
Thanks for stopping by,

1 comment:

  1. Hi Erica,
    It must be a frustrating process of the suregery's and not feeling like "something" was done to make you feel better. It is hard for me to understand, but as Anisa's mommy and your friend, I am always here to support you and love you through your struggles and hurts.