Really only 21 though, just wanted a rhymy sounding cheer!
Today's surgery took about 2 hours. - My pre-op facebook rallying cheer was the title of this update to make me smile/be silly as I had silly, funny nurses. =)
Revised at collarbone (not flowing) and revised at proximal (tip) to re-position in the ventricles w the GPS/endoscopes due to that also not flowing once they opened up the collarbone incision. They did end up placing a mini-nav '0' one way flow (non)-valve back in this and then at the collabone when Dr.Bragg came in this morning to pre-op she and her NP said they had been talking to their medical engineers and Neurologist who helps w their very complex shunt patients and came up w a completely. new plan. She took a valve tehy had also by Miethke (H/V Shunt Assistant) which has settings of "0" in the Horizontal (laying down-flows more" position and setting of 15cm in the vertical position (standing up, gravity) to overcome the issue we have been having of over-drainage/ventricle collapsing but needing to drain alot of fluid to be at the '0' brain pressure level. (Zero CSF which is what bathes the brain and in some case such as mine the body isnt able to absorb properly and become sick).
We dont know if this will work and arent out of options if it doesnt and Dr.Bragg still feels confident we will find the right answer + as well she is surrounded by some very amazing talent amongst her own to. As I told her and have written her before I am just really grateful she is so persistant and wonderful!. We both thought when she got the incision open that maybe the ventricle would be open and the shunt working ( not occluded) - it does this intermittent occlude/collapse/forced open (like trying to suck fluid through an straw to fast almost the walls collapse in) thing at times and thought maybe that was what was going on but then she instead she found both the sections she opened where not working well so we ended up fixing both parts. Overall the surgery took about 2 hours w a mix of all the equipment used (the GPS like guidance system being placed, then removed to insert the endocscope whch was then removed to re0insert the GPS like system.
Anesthesia had gotten a copy of my Cardiologists notes and because the aortic and mitral stenosis is so bad (severe range) they changed up how they administered anesthesia throughout the case, how they put me to sleep (but used same airway qeuipment due to airway) and ahd of even sedating me opted to put in an aterial line as she wanted to be able to follow every heart rhythm and blood pressure moment to moment vs waiting for the machine to go off every couple minutes and concern what if the machine paused or had a malfunction tehn having to miss multiple minutes or more of rate and blood pressure potentially missing any issue out to organs not getting perfused enough. Her biggest concer (there where 2 anesthestiolosit and the Resident Anesthesiologist) was 1. already very low BP, 2. organs not getting oxygenated blood, and 3. stress on the body from the cortisol deficiency and giving this as a additional replacement if needed during the case on top of the dose an hour ahead of time. The arterial line was interesting but didnt hurt as bad as I thought it might when being placed and they quickly albeit slowly (think starburst contradiction, ha!) in the process,
Dr.Bragg must have asked my Dad about where I was going to have the valve replacements done (he doesnt know bc I dont know bc my Cardiologist and I are mulling that over tilll we have to decide) and commented I guess to him that we may have to put in external drains (??) during the valve replacement surgery which if true (will tyr to rememebr to ask her tomorrow) would mean needing someone she could recommend wherever we do this OR could I fly her in privately (wouldnt I wish!) as I dont think any replacements would be done at her hospital; that hasnt been mentioned at all. I am very curious about this and if true can only figure maybe it has to do w the one shunt drainning in to/around the lung space and that affecting surgery outcome?
I am purely exhausted so will try to update anything else or anything I am forgetting romorrow.
God bless and thank you for stopping by,
Erica
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