I've not yet heard from Dr.Mitchell, my CV (Heart) Surgeon ofc but I also know it takes time. I know Dr.Earing works ALOT faster than most Dr's offices!
I know scheduling wise the Team is looking at Jan or Febr and I did hear from Dr.Taylor, the Anethesia dr. who has done both prior OHS and both prior heart procedures.
She has reviewed my Cardiologists notes and
is going to talk to the Team and coord. timing so I am relieved she's willing to do the Anethesia for this surgery to.. It takes stress off me knowing I'll have a Dr that's familiar w the airway issues to in addition to my Heart drs. have seen my Heart before in surgery.
Perhaps it sounds odd to be more concerned about the airway issues but I do feel more relieved w most (all?) surgeries or procedures when there's an Anesthesia Dr on the Team whose done surgery on my case before.
I had a post op Appt today w Dr.Bragg in which she told me not only was there 7 (or maybe it was 8) incisions, and sone funny conversation related to this, the General Surgeon and how rough my skin is to get shunt catheters through.
I had to laugh when we where talking about the surgery, her and the General Surgeons response during! Our skin with MPS can be unusually tough although most often it does soften once those of us who receive ERT start it. For whatever resin in my case this seems to either never have happened or has reversed itself as Dr.Bragg talks about w lost every surgery how tough the skin is to unnel catheters through on order to place the shunts.
It seems I was also wrong about what setting the 2nd (VPL) Shunt was at.
As it turns out (and probably explains my damned confusion /scatterbrained/feeling like I was literally losing my mind this past 2 wks) the VPL Shunt was set 4 above the bottom (but after surgery pressure was to low so I had asked for the shunt to be set higher temporarily and while still in-pt we did turn it down 2 settings) so in fact yesterday (Thurs) we actually where able to turn it down 2 settings and Dr.Bragg said we have 2 more settings we can go down if needed. That made me super happy!
So at today's (Thurs ) appt Dr.Bragg turned the VPL Shunt down 2 more which definitely has already made a difference in my feeling like I was just danged confused about stupid stuff! In Madison today I needed to stop at 2 stores and I literally had to turn around no less than 5 times trying to get some place even though I knew where the store was! I backtracked, would turn around, back track some more. It was almost funny albeit super frustrating bc I knew where I needed to go but couldn't figure out what exact way I needed to take - this to places I go frequently!
Dr.Bragg did say if I felt I needed it to let her know and she'd turn the shunt down the final 2 settings. I am glad she's willing if needed!
The only down side to this shunt (draining to pleural space) was I already was getting a semi persistent cough the past few days by mid/later in the day day and can tell it's a little worse today. THAT is going to suck if it cont's during (after) the OHS!
As far as the up coming OHS and the VPL Shunt draining to the pleural space, my Heart Team/Dr.Bragg being are w it draining to lung space. Dr.Bragg said part of this was they felt there was only a small chance they'd need to put a chest tube in on the R side and all where happy this shunt seems to be working so well so if needed /if they did end up needing to place a chest tube in that R sided pleural space during the OHS, the shunt cathether would just be externalized at that part of the shunt temporarily. I guess Dr.Bragg would re-internalize it later.
I amniy entirely sure how that would work given she's at a different hospital /different city but will ask her. I am hopeful this won't happen BUT if it did I am glad all (Dr.Bragg, Cardiologist and Heart Surgeon) are at least on the same page and I guess would talk to each other then to sort it out..
Will update when I know a surgery date,
Thanks for stopping by,
Erica
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