Monday, October 5, 2015

Surgery F/up with Dr.Bragg (scheduling for VP Shunt), Next up Heart Rhythm Appt.

Hi All, What a week =) Not a particularly bad week, I mean sure the headaches have definitely been there as has the on/off breathing issues and sleeping that makes me really, realllyyy hate (dread?) sleeping but those things aside (MPS aside really) things have been ok.. My car decided it wanted to do it's own thing last wk as I wrote about I think in my last post and it turns out we figured out what the problem was. Thankfully my brother was able to make one of the parts that had broke/was partially broken and the other part was relatively cheap + he was able to replace. This apparently explains why my car seemed to be overheating without actually seeming to over heat (antifreeze leaking).
Needless I was in Milw. late last wk again and it seemed to be doing the same thing so I took it over to my brothers again Fri (Beaver Dam) and he then figured out the problem and overnight fixed it (I took his car home, which is the exact make of my former car - a little unnerving). I am DEFINITELY glad to have my little car back! Beyond grateful to my brother to.

Dr.Bragg, scheduling VP Shunt placement, CT Scan
Today's Appt with Dr.Bragg went well I think, she has a new Nurse (not sure if a 2nd one or if this one replaces her former Nurse Lisa, who was very nice and always very helpful if needed). In any case Dr.Bragg brought that Nurse (Laura) in and introduced her. It didn't even register at 1st that Dr.Bragg meant she was a new clinic Nurse. I can be rather dense picking up information given sometimes. =)
In any case Dr.Bragg showed me the former Xray from last wk taken of the LP Shunt and where it was kinked (apparently the Radiology people read it as normal at 1st, Dr.Bragg made the comment "it's a good thing we check our own films" and then commented to her new Nurse how the shunt was kinked and we'd had to go back to surgery as an urgent case 2days after the 1st surgery. I should have taken a pic while there but did get a copy of the Xray film (CD) so will post a pic of that in 1 of the next updates perhaps. =) It was like a circle with the tubing really - I guess I could see how it could have been overlooked perhaps by the Xray/Radiology folks.
As far as putting the VP Shunt back in Dr.Bragg is out for the better 1/2 of Oct and part of the 1st part of Nov. so i'll talk to her Secretary and schedule surgery for early/mid-Nov. She asked if my Cardiology Team (Dr.E or Dr.Kovach, Cardiologist and Heart Rhythm drs.) where making any changes to the cardiac meds I am on which I kind of blanked but I do see Dr.Kovach this Thurs. and I know there was talk of upping the Ivabradine (Corlanor) dose from 5mgs 2x's/day to 10mgs/2x day). Given surgery is essentially will be a month or more from now this gives time if they do adjust that med dose for it to kick in and any issues should there be any (not that there should be any, is a pretty side effect free med amazingly) to sort out and my Team to see how it does before any surgery.
Before surgery she'd like what is called a 'Stealth CT' which basically means she uses a scan which is able to be uploaded in to a computer system and this helps guide her/her Team in positioning and placement of the VP Shunt. It also means the surgery can be done with a minimally invasive (much smaller) incision vs how many VP Shunts are placed under. The scan itself is really quick and as far as surgery doesn't affect me one way or another other than more accurate catheter placement due to my teeny tiny vents (ventricles) and brain/skull that are pretty non-compliant.
Given we are doing a Stealth CT Scan instead of a quick brain MRI I won't have to see either Dr.Bragg or 1 of her NPs after to have the LP Shunt re-programmed. I like all of her Team of course but I am not complaining about 1 less thing to coord. =) Maybe I can coord. the scan the same day I do the pre-op. or some other appt., I really need to get a Audiology and Neuro-Opthalm. Appts caught up so could always do either of those as well (not a huge deal to me, my Genetics dr. and Primary Dr. remind me each time I see them, to do these per MPS protocol). Will see. There's always grocery shopping to, my favorite reason to go to Madison. =)
I'll have to do another pre-op with my Primary dr. which is almost humerous; I actually think 95% of seeing Dr.Simpson is just for pre-op Appts as most of my other issues are managed by someone else so I rarely otherwise see her. Even her MA teases me good naturedly when I come in about this fact. =) Funny but not funny, right?!? My Primary does do a great job of pulling information together from my Neuro-Endocrine dr. and my Cardiology Team and coord. all of this (making sure all info is in place) so often times it is useful as she makes the appt run extremely smoothly so generally isn't to torturous. =) I have a few questions for her/or my Cardiology Team so this lapse in time to surgery gives me time to sort those things out. Isn't anything to important just a couple questions I have for either related to the heart stuff and surgeries.
Dr.Bragg made the comment when we where talking about timing for this surgery and about waiting to do it when she would be most around (vs say next wk and then risk being in-pt or having issues and she not be in town) about being in-pt for the holidays again (I was close to being there on Thanksgiving last yr but we avoided it, and avoided Dec. althogether though the 2yrs before I was there during and right up till Christmas). She apologized for this but I think we should still be doing this surgery early enough I should almost certainly be out by the time Thanksgiving roles around and Christmas well I am making it my mission to make it a 2nd yr with no Christmas in-pt! =)
As many (but not all I would imagine) know Monday's are typically the day I get my weekly Enzyme Replacement Infusion in Milw., this drug/infusion of course runs over quite a few hrs. (5ish) so isn't generally possible to coord. other appts the same day and especially appts in other cities. Generally I do INR checks, next door at CHW (Cardiology Teams hospital) before I go over to ERT but that's about all. 
I have to say though and it always amazes me bc Mondays are my normal infusion day on days like today where I see Dr.Bragg and thus move my infusion to a different day she pretty much always asks if I've gotten my infusion already or was I able to reschedule it.
I know I've been seeing Dr.Bragg for just over 4 yr but still it amazes me she always remembers I get this ERT and is always concerned that I not miss it. She genuinely cares which is so sweet. Sure she's my Provider and has done a lot of surgeries for me but still it's not like she'd have to remember this detail. :) 
Random pics, Sunday School, etc.
I shared a few pics of various things below including 1 of some of my SS kiddos that where at Sun School today - in total I had 2 kids missing but was nice to be back today (only my 2nd week out of the 4wks SS has been going).
If anything to update i'll post a new entry after Thurs's EP-Heart Rhythm Appt. and will update info here in next entry what the dates are for pre-op, CT/Stealth Scan and Surgery date.
I don't think i'll see Dr.Bragg between any of this and the actual surgery date but if I did come up with any questions I know I can get ahold of her Team; the only ques. I didn't think to ask her today was if we could use the regular size Codman Hakim valve vs the smaller one when we do re-replace the VP Shunt next month and that I can ask her beforehand.
Thanks for stopping by,
Erica

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