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
Wednesday, January 23, 2013
Sunday, January 20, 2013
Surgery (shunt) revision #21 (or something)
Most of the time I do find it really cathartic (calming) to write here not to mention it is a really good way to be able to go back and look at what has happened in the past and look at a detail for information. The last few days (since thurs) the most I could do was open this page and leave it open I just dont feel like writing about this week and especially the last few days; I dont know where to begin I guess? I am tired and although definitely not depressed bc its not worth being depressed about and ive had other things going on I just feel alittle (or alot) like this is the movie groundhog day replaying over and over and over... Last week it started (teh worst of it anyways) with mondays waking up in the middle of the night throwing up left, right and center, and nausea and headaches that where just out of this world (pressure) to the point even the ativan I took wouldnt calm the headaches down. It was bad so very bad but just didnt want to go to the ER and thus back to the hospital and actually thought it would get better. Tuesday by early afternoon I was feeling somewhat better, atleast after multiple doses of the ativan I wasnt throwing up. Weds early morning not long after going to bed (so really Tues late night) I woke up w the same thing again throwing up despite various nausea meds, ativan dose, etc. AWEFUL! Probably should have given in then but didnt and finally after hours of that and being sick most of Weds to got a little better. I finally called Dr.Bragg's ofc Weds afternoon and got an appt for thurs morning.
She (Dr.Brragg) did shunt taps on both the Thoracic-Pleural shunt and the VP shunt and the TPL shunt didnt have much flow I guess but had a little so she believes that is working (a chest xray was clear and fine) and the VP tap did not bring any CSF flow so she suspected right away thats where the problem was. She took out the rest of the dissolvable stitches and ordered a 'quick brain' MRI after which I went back up to the clinic and she reviewed plus came back in to see me, talk about surgery which we knew we where going to have to do just werent sure if we where going to do on Fri or wait till Tues (we are waiting till Tues). The MRI actually showed the ventricles had enlarged some from the last imaging done a few weeks ago while in-patient then which NEVER happens w shunt failures so that was about as clear an answer as we could have asked for on what was going on not that we didnt already know. After those results and talking to Dr.Bragg she sent me back down for a CT scan to help her w /her planning for the GPS guidance/endoscope system they use in surgery and I was finally able to go home. Exhausting!
On the way home as if that all wasnt enough I rear ended (of all things) an ambulance (no patients in it, was just stopping in rush hour traffic) downtown Madison - talk about CRAPPY day!
I now have the lovely distinction of 'having the most shunt issues by far of any of their patients and absolutely the worst luck" according to Dr.Bragg's nurse - =/ (she wasnt saying it to be mean, more she couldnt/cant believe the crap luck we have w these shunts and how often the failures/revisions are occuring). - They think it has alot to do with the underlying MPS which I would agree with.
Dr.Bragg thought she would likely try the same aesculap mini-nav 'non-valve' one-way flow control (to keep CSF from backing up from the peritoneum) on the shunt but at the next highest setting ie instead of right now we have a '0' so now pressure she is going to try the next step up so there is a little bit of a pressure control to try and keep the ventricles open as she thinks they collapsed and thus caused an occlusion in the catheter (or something like that) due to too much CSF flow but at the same time that very low intercranial pressure/high flow is exactly what I feel greatest at so we have a balance to figure out. I also personally dont think my stomach is loving the CSF flow in to the peritoneum although I dont think that is affecting this particular shunt issue.
Otherwise the 'pre-op' done when back in-patient when I was re-admitte Christmas Eve via ambulance from the local hospital was able to be used for this surgery (that was a small piece of good news!) so we didnt have to worry about getting that in before this surgery since there is s few days and monday is infusion day + a holiday for most clinics. Labs where done at AFCH's clinic.
Cardiology due to their concerns w the heart and valve changes faxed over their most recent note to Dr.Bragg's office on Friday.
Infectious Disease NP who followed me throughout the Dec stay/4 surgeries called me on Fri but I missed her call and the VM didnt come through till later in the day but she said in her message she would call me on monday with whatever recommendations she has and has already talked to Dr.Bragg/her team.
On a different note that I am looking fwd to as it is something those who know me know I am passionate about my Pain Mngmt dr called me 2 weeks ago and then sent me a message when I missed both her calls about a meeting she is co-hosting for medical professionals (of which I am not) on Pain Management, opioid prescribing, drug diversion and protecting the prescribers practice. The meeting will feature speakers from both Pain Management backgrounds, Drug Enforcement Agent (DEA), and Pharma and she asked if I would attend this and during the discussion phase participate and represent the patient population (why these meds works/what benefit they have/how it has made me able to function despite an all-encompassing multi-systemic disorder in which ive had literally dozens of surgeries and I imagine the things ive done to protect myself ..(secure lock box anyone), dont leave meds un-attended (keep them on you at others houses/parties, make sure other providers know what you are taking and be responsible). This meeting is I think I may have previously mentioned the same night as our sunday school monthly meeting (which I actually look fwd to) which is a bummer and I am above all praying this surgery Tues just goes SMOOTH so I am OUT! My Pain Mngmt dr messages me the other day once I let her know of the shunt issues and Dr.Bragg appt and said the same thing "she really hoped it went well and really wanted me to be there at the meeting". I love and appreciate that she trusts in me of all her patients for a meeting like this and that she is so amazing at sharing all she knows so I in turn have learned so much about the Pain world and thus how I in the first place got involved initially with APF (Pain Found) bc I found it interesting and wanted to help other pts learn.
Will update if anything new before or otherwise after Tues.,
Thanks for stopping by,
Erica
She (Dr.Brragg) did shunt taps on both the Thoracic-Pleural shunt and the VP shunt and the TPL shunt didnt have much flow I guess but had a little so she believes that is working (a chest xray was clear and fine) and the VP tap did not bring any CSF flow so she suspected right away thats where the problem was. She took out the rest of the dissolvable stitches and ordered a 'quick brain' MRI after which I went back up to the clinic and she reviewed plus came back in to see me, talk about surgery which we knew we where going to have to do just werent sure if we where going to do on Fri or wait till Tues (we are waiting till Tues). The MRI actually showed the ventricles had enlarged some from the last imaging done a few weeks ago while in-patient then which NEVER happens w shunt failures so that was about as clear an answer as we could have asked for on what was going on not that we didnt already know. After those results and talking to Dr.Bragg she sent me back down for a CT scan to help her w /her planning for the GPS guidance/endoscope system they use in surgery and I was finally able to go home. Exhausting!
On the way home as if that all wasnt enough I rear ended (of all things) an ambulance (no patients in it, was just stopping in rush hour traffic) downtown Madison - talk about CRAPPY day!
I now have the lovely distinction of 'having the most shunt issues by far of any of their patients and absolutely the worst luck" according to Dr.Bragg's nurse - =/ (she wasnt saying it to be mean, more she couldnt/cant believe the crap luck we have w these shunts and how often the failures/revisions are occuring). - They think it has alot to do with the underlying MPS which I would agree with.
Dr.Bragg thought she would likely try the same aesculap mini-nav 'non-valve' one-way flow control (to keep CSF from backing up from the peritoneum) on the shunt but at the next highest setting ie instead of right now we have a '0' so now pressure she is going to try the next step up so there is a little bit of a pressure control to try and keep the ventricles open as she thinks they collapsed and thus caused an occlusion in the catheter (or something like that) due to too much CSF flow but at the same time that very low intercranial pressure/high flow is exactly what I feel greatest at so we have a balance to figure out. I also personally dont think my stomach is loving the CSF flow in to the peritoneum although I dont think that is affecting this particular shunt issue.
Otherwise the 'pre-op' done when back in-patient when I was re-admitte Christmas Eve via ambulance from the local hospital was able to be used for this surgery (that was a small piece of good news!) so we didnt have to worry about getting that in before this surgery since there is s few days and monday is infusion day + a holiday for most clinics. Labs where done at AFCH's clinic.
Cardiology due to their concerns w the heart and valve changes faxed over their most recent note to Dr.Bragg's office on Friday.
Infectious Disease NP who followed me throughout the Dec stay/4 surgeries called me on Fri but I missed her call and the VM didnt come through till later in the day but she said in her message she would call me on monday with whatever recommendations she has and has already talked to Dr.Bragg/her team.
On a different note that I am looking fwd to as it is something those who know me know I am passionate about my Pain Mngmt dr called me 2 weeks ago and then sent me a message when I missed both her calls about a meeting she is co-hosting for medical professionals (of which I am not) on Pain Management, opioid prescribing, drug diversion and protecting the prescribers practice. The meeting will feature speakers from both Pain Management backgrounds, Drug Enforcement Agent (DEA), and Pharma and she asked if I would attend this and during the discussion phase participate and represent the patient population (why these meds works/what benefit they have/how it has made me able to function despite an all-encompassing multi-systemic disorder in which ive had literally dozens of surgeries and I imagine the things ive done to protect myself ..(secure lock box anyone), dont leave meds un-attended (keep them on you at others houses/parties, make sure other providers know what you are taking and be responsible). This meeting is I think I may have previously mentioned the same night as our sunday school monthly meeting (which I actually look fwd to) which is a bummer and I am above all praying this surgery Tues just goes SMOOTH so I am OUT! My Pain Mngmt dr messages me the other day once I let her know of the shunt issues and Dr.Bragg appt and said the same thing "she really hoped it went well and really wanted me to be there at the meeting". I love and appreciate that she trusts in me of all her patients for a meeting like this and that she is so amazing at sharing all she knows so I in turn have learned so much about the Pain world and thus how I in the first place got involved initially with APF (Pain Found) bc I found it interesting and wanted to help other pts learn.
Will update if anything new before or otherwise after Tues.,
Thanks for stopping by,
Erica
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