Tuesday, June 9, 2015

Discharged; 4.5 wks in-patient, not feeeling the best, could always be worse?

Hi All, Sorry for no update, generally fb is easier though I try to do this so other families or individuals dealing w MPS or any of the issues have a place to read about experiences and to honestly it's a way I can come back and see what happened at whatever point I am trying to remember.
I did get discharged on Sat., Dr.Bragg wasn't rounding at all that wknd and I figured I could feel just as bad at home as I could at the hospital. The Nurse I had said to me when we hugged before I got in my Dad's truck "I doubt this will be goodbye for long but take care of yourself" which was both funny and a little sad, I think she could tell just how bad I felt. Hopefully i'll start to feel better and if not I cant even begin to say how hard I have been praying my body will heal and/or Dr.Bragg will have an idea how to help when I see her at fup.
I am hopeful maybe Dr.Bragg will be able to help me sort this all; I admittedly felt a little like I did something to make her upset at me though I don't know what that would be and I really, truly hope it is not the case. My Dad and I where talking some on the way home and he said he wondered if Dr.Bragg is afraid of me/of disappointing me when I brought this concern up? I hope not, I almost cried when he said that although I know he was only being honest.
My Parents both really like Dr.Bragg and appreciate her not having given up over the years. My Mom tends to be pretty skeptical of drs in general and definitely not their biggest fan but Dr.Bragg won her over long ago, I think simply bc it has been so obvious she doesn't just do her job for the money's sake and she's often went out of her way to try and help + she's always tried to look at the bigger picture in my case. BR> My Parents have been so grateful to her for not giving up on me, for continuing to try to help when they know it must be hard for her at times and for her being in a way like more of family than some of my brothers are as far as how much she tries to help, reaches out and in that she seems to care.
I know at times I've vented about the shunt situation on my fb although never personally about her (I don't think other than maybe I was scared she would run out of ideas, never really realizing that might be like saying I didn't trust her?) My Parents both commented they wonder if this could be read as my being upset with her? I hope not but not sure how to make that transparent?
I am not sure just feel like something changed in the last 1.5wks in-pt. I hope not. =/ You may ask why would I care what a Provider of mine thinks but in this case she has done so much for me to help me over the paat 4 yrs and been one of the drs who has always seemed to trust me, to trust what I said. She's worked well with other of my Providers and she's never given up shunt wise trying to help. In all this I trust her just a little nervous if I have done something to upset her.. On a semi un-related note my Mom told me that at 1 point Dr.Bragg told her the average person makes something like a shot glass full of CSF a day and I make more like a coke can worth in day. I am not sure but hope i'll remember to ask Dr.Bragg if that is part of why we have so much difficult w shunts? I know to Dr.Bragg has mentioned about the overly thickened skull bone factoring in. That was just an interesting piece of information I thought!?
Things have been pretty difficult w the seeming spine nerve irritation, when this occurs, worst as I am sitting my neck gets so, so stiff it hurts to even look down or sideways. I am guessing this is bc of the seeming severe over drainage after we placed the 0 pressure valve and then my body wasn't to happy to be fiddled with in a 3rd surgery 1wk ago when this valve was taken out and the programmable valve was put in. I kind of can't help but wonder if we should have or maybe still should turn the current valve up to a higher setting to give the nerves time to relax. I do think I'd get pressure headaches but i'm not sure otherwise how my upper back and neck are going to heal? I don't really know. I think if the nerve irritation healed we could then slowly turn the setting back down as I think lower settings are still needed. I seem to get worst symptoms when I lay down (though I try to never lay flat) and back symptoms for whatever reason as the worst when I am sitting, better when I am standing.

Otherwise I see the Heart rhythm doc this week, he is the dr my Cardiologist wanted me to see regarding potentially starting a new med that is on the market for heart failure as his hope is it will help slow heart rate and thus help slow mitral valve worsening.
I also see a new doc for botox and hoping maybe that could help, hopefully won't make it worse though it shouldn't?
Next wk I see Dr.Earing (Cardiologist) just for 1mo fup from the upped dosage of Cardizem and 6mo Echo.
I am hoping and praying I start to feel better by then!?!?!
Thanks for stopping by,

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