Monday, December 7, 2015

3rd OHS Scheduled.. Thanks but no thanks to OHS before Christmas...

**So the 3rd OHS is scheduled for Jan., 21st with pre-op scheduled for Jan 20th and I asked to meet with Dr.Mitchell, (my Heart Surgeon) ahead of surgery so that is scheduled for Jan. 5th. This is all at Children's Hospital of Milw. **

What a week (or couple wks?) - Whew this last surgery has both been sooo good and yet so befuddling In how it's seemed to mess with my brain! I do still get headaches but these are not as bad as they where prior to surgery which I am grateful for! This said my vision with typing this and if I try to read (I haven't even bothered with trying to read a book which makes me a little sad!) I just feel so out of sorts and is driving me batty!
Last wk our turning down the VPL Shunt 2 notches did help with the headaches and with the foggy brain/feeling off centered but at the same time I have to say this is still so there and keeping me feeling so weird feeling. Gawd I hope we can figure this out! We do have 2 more notches to turn the shunt down which I talked to Dr.Bragg and she was more than fine with our doing (she had told me as much last wk to).
I talked to her Secretary, Dr.Bragg was going to be out of the office this wk other than today, Dr.Bragg offered to try and see me today in her clinic but I can only do Infusion certain days due to the length of it and is hard to reschedule so I am working with her Secretary to see her 1 NP and have Emily re-progam the VPL Shunt on Weds.
I think turning the VPL Shunt down last wk helped but have to admit I have just never had this type of symptoms so while I know it's pressure related I am a little baffled by this all! Vision (like trying to read or trying to type this) is nothing short of frustratingly getting on my nerves! I am way behind on seeing the Eye dr (lol, something my Primary dr mentions every time I see her in the past yr) so infinally made an Eye Appt that is in 2wks. Maybe I just need stronger glasses but a little weird, if that is the case that it occurred right after this last shunt surgery. That all said reading Dr.Bragg's and the General Surgeon's surgery notes the surgery was nothing short of tedious it seems to get the new (VPL) Shunt placed. So who knows?

Heart surgery wise, Dr.Mitchell, my Heart Surgeon drs. Secretary called today and they have talked to both my Anesthesia dr. (Dr.Taylor, airway) and to my Cardiologist (Dr.Earing) and while I do want to feel better I did laugh and politely decline their offer to do this MVR replacement already the end of next wk. I am thinking they must have thought I'd opt to take the surgery date they offered next wk as the Secretary offered it to me while also adding 'You can decline and we'll pick a new date'. I did turn the date down politely and Lori, in turn talked to my Cardiologist and Anesthesia drs Team and came back by this afternoon (Monday) with new options. Perhaps some Patients would want to feel better that badly and not mind the risk of being in-pt for the holidays but I have so many things I want to do yet before Christmas and frankly have just spent to many prior Christmas's in recent years (2 of the prior 4 or 5) in-pt so I really, really want to try to avoid this one being in a hospital! Just need the shunts to last!
While it would mean missing less of my Sunday School class had I taken the OHS late next wk I have to many things for Christmas celebration planned with my SS kids and our program in the next couple wks. and with family. So Lori (Secretary) talked to Dr.Earing and coord. a time in Jan between his schedule and Dr.Mitchel's so they are there for surgery together. They also coord this all with Dr.Taylor for a time that works for us all. Yippe, skipee (note sarcasm).

Now to just keep both shunts working!!!!!

Stay tuned, never seems to be dull on the MPS front (I would take dull, it would be alright..).

Say a prayer this shunt/oddness improves/goes away!
Thanks for stopping by,

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