Sorry for no updates here after surgery.
The mitral valve is in and have been off the ventilator since 24 (or maybe 2 days?) after surgery.
Pain well managed, just 1 chest tube left in due to cont to drain a fair amount of blood from it yet.
Worst issue since surgery has for sure been a crazy, bad UTI. Ugh!
My Surgeon told my Parents it was a good decision, a needed decision that we did the mitral valve replacement when we did as it was in really bad shape. I guess given 2.5yrs ago there was already questions about this valve and should they do the MVR when they did the aortic valve and aortic root enlargement (they felt the risk was to high if I remember right due to how long I was already on/going to be on the heart lung machine so opted to wait and try other things 1st.
I guess I get the record for 1st person with MPS to have 3 OHS if nothing else? Not particularly a record I'd have cared to hold though!
Given we knew how bad the Mitral valve was then is probably no surprise the valve was in such bad shape. The increased/high pulmonary pressures where another sign pointing to our needing to get it done.
Thankfully we got it, decided to do the replacement when we did (I'd been having symptoms for some yrs but the symptoms greatly worsened since last Spring-ish and got even worse in the past month leading up to this surgery last wk.
I am definitely glad to be on the other side of OHS again!
Monitors are going off like crazy, some unusual or bad rhythms I guess and fast heart rate.
For intubation Dr.Taylor, my Anesthesia Dr went with the endotracheal (breathing) tube being down the mouth vs the last 2 OHS she had done intranasal intubation. I thankfully remember very little of this!
The Arterial line and another central access line are still in place but may come out Mon.
Otherwise not much to update - thanks to everyone who reads this but is also on my fb and left kind and thoughtful posts there. I think they are a huge support to my Parents.
1 of my Pastors came Thurs and some other friends came to visit today as well as my Parents of course.
I should receive the ERY Infusion tmrw while here, the drug per my Genzyme Case Manager shipped out for here on Fri.
I don't know a whole lot else right now so will update again sometime soon.
I'll post other pics in the next update.
Thanks for stopping by,
Erica
PS: A few of the OR pics are from 1 of my Providers.
My Dad took the sedated/intubated. pics in my Patient rm.
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