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 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.
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.
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,