Monday, January 11, 2016

Crossing T's and Dotting I's?.. Plan and prepare.. Heart surgery..

Nothing to big in this update, honestly just a few things I forgot to mention last wk (I think?) and a few things I have been mulling over.. I kept questioning my drs., re the shunts and this upcoming heart surgery, should fluid build up around the heart and around the lungs after the MVR is done (Dr.Mitchell's bigger concern with the VPL Shunt) and a intervention end up being needed what would they do with the shunt or how would they manage it all? If fluid builds up post heart surgery in pleural (lung) or around heart  Dr.Mitchell at the appt last wk was uncertain but concerned this could affect the VPL Shunt and is why he wanted to have a plan in place w the Neurosurgery Team at CHW.
He wasn't sure and couldn't say if fluid in these areas would affect shunt function but felt if this happened (which happened w both prior OHS) the need to place a chest tube in the lung spaces would probably be a lot higher. The big question is would they need to move the VPL draining (distal) end of the shunt then.
I don't know what they will decide if notjing else will definitely be asking what the plan is at the pre-op Apps the day before surgery. I am confident  my Team will have 1 in place but I still want to know what it is!
I just want really to know what the plan is between my Cardiology / Cardiovascular Team and the Neurosurgery Team at CHW, whoever Dr.Mitchell ends up talking to, simply bc I'd like to know ahead of time. The surgery is the 21st so not all that long out, a wk from this coming Thurs.
I see my Pain Mngmt dr. this coming Thurs so had sent her a message to see if we could potentially work out a (open ended?) pain plan I/she can share with my Cardiology Team at CHW which they can use along with what they did last time /the past 2 open heart surgeries as a primer of sorts for managing post op pain? I know my Anesthesia dr. has been thinking about this and hopefully with have thoughts in mind to but knowing the Pain Team at CHW for whatever reason after the 1st OHS asked my Parents if I was 'abusing drugs' (paraphrasing what my Parents later told me as I was still sedated at the time I think) and didn't seem all to willing to contact my Pain mngmnt dr. or perhaps see what we've used at UWHC I feel like it might be a good idea to have a tentative ideas in place?
The Pain Team at Children's doesn't have an entirely great reputation and personally when my own Anesthesia dr has brought up how she thought pain after the surgeries was an issue I feel like we need to have ideas in mind/in place!? The Pain Team seemed hell bent they where going to do their own thing and thankfully while I remember pretty much none of it from both being sedated (but must have been some awake at times just intubated? Not entirely sure?) Anyways I know from what my Parents have said and even from things my Anesthesia dr. has said the post op after the 2 OHS was not great but definitely worse after the 2nd one mngmt wise.
So anyways I figured I would try to work with my Pain mngmt dr and give them an outline to potentially work from this time?
What it comes down to is I am just trying to cross all my T's and dot all my I's as much as possible ahead of the surgery day.
I also talked to my Genzyme Case Manager (Genzyme distributes the ERT I receive every wk), Amy was just getting back after being out for close to a month for her wedding but was in the process of reaching out to the Nurse in Genetics at CHW re ordering the enzyme drug for when in-pt at CHW after the Heart surgery and helping to get this all coordinated. She (Amy) will talk to the Nurse I worked with last wk when I met with Dr.Mitchell, at CHW and try to see if she and Yvonne can make sure things are squared away for after the 21st that drug can be ordered and given while in-pt. 
She (Amy) did email me today to say she would be talking to the Nurses at CHW herself bc she knows I'm a little nervous about not knowing who exactly I talk to to make sure a plan is in place re the ERT. Amy said she would be sure there's  a plan and any questions ironed out as much as possible ahead of time. Originally the plan was she was going to talk to the Genetics Nurse who would then (hopefully) coordinate all this. I am grateful to Amy and for her being on my Team, especially that despite her being on the edges in a sense of my Team (regarding this Heart surgery ) she's still staying as involved and trying to make sure this are as in place as possible. 
She was going to arrange it so Aldurazyme would be able to be ordered for however many wks I'd  need it at CHW (hopefully just one given Dr.Mitchell felt would be 7-10 days in-ptbif all goes well).

The Aldurazyme (ERT) was arranged for the 2nd OHS in-pt stay at CHW and given (not the 1st, sort of a long, ridiculous story) and for that matter Dr.Bragg's Team was able to sort it out a few yrs ago, that I could start getting it while at UW so while I am cautiously (figuratively) holding my breathe an I feel semi optimistic it will work out again the drug can be ordered for at CHW- when in-pt. With Any, my Genzyme Case Manager helping I feel much more optimistic about this. =)
So the schedule for surgery so far is:
Pre-op Appt: Jan 20th, 11:00am, this includes a ultrasound/scan (I think for catheters they have to insert, but not entirely certain, it was just added last wk).
Meet with the Nurse and PA and (typically, she was trying to arrange her schedule) Anesthesia. 
I am hoping they can tell me more about Neurosurgeries plan 'in case' if needed. Surgery plan (estimated length, if it's in fact just Mitral valve, size, etc-just details I like). And any other details they feel are important.
Labs, labs and oh Labs?
Whatever else I am forgetting. Thankfully the bigger tests where done already (Echo, Cath, Heart Rhythm, etc.) so we'll see and whatever else they add.
My Heart Rhythm Dr had emailed  a few was back he planned to stop by at some pt while in-as he is curious how heart rate will do after this MV-Replacement. It can take weeks or months to know true extent but they get some idea coming off the heart/lung machine and in the days after how heart rate and rhythm are doing. He is watching for the sake of our potentially being able to cone off the Ivabradine (for heart rate control, CHF).

I think if anything makes me nervous about this upcoming 3rd OHS it is the shunts, not yet knowing the plan yet (but I'll get it) and hoping the headaches stay what they are at? Not perfect by any means but also a little better than they had been? I think the bigger issue w headaches right now is still nights/mornings (but I plan to ask they leave the head if the bed elevated if I am out for any period of time which will help at least a little) and I keep getting (at least relatively short) migraines which I only get when the shunts are being stupid. I do think still the shunts are working some better than they have in a while though, the migraines seem certain part of the day.

I hope to if they do need to do anything with the VPL Shunt they communicate with Dr.Bragg, keep her updated.. I know I can when I am awake but just be nice given she IS my Provider and manages these shunts otherwise!
Otherwise last but not least, this coming Sunday is my last week teaching Sunday School for a few wks. Some friends are taking my class for the wks I am out, hopefully only a couple wks. I love seeing my kids every wk and learning with them so I am hopeful it won't be a long period I ma out!
Our craft for this wknd, unrelated to our lesson (3 men in the fiery furnace, how God protects us in our faith) is wooden snowflakes I found some wks ago at Michaels. I'll attach a picture from our craft last wknd which was beaded snowflakes, a craft I'd found online. 
In any case that is all, nothing really to important, more or less just my thoughts/feelings in this post.
Thanks for reading if you did, 
I'll  try to update 1 more time at least next wk after the pre-op Apps Thurs night (night before the heart surgery) but otherwise my Mom will likely update my fb and short updates here for a few days after the heart surgery.
Thanks for stopping by,


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