Odds and Ends

Surgery check-list:
Pre-op physical (x)
Endocrine related pre/post-op meds arranged (x)
Pain Mngmt dr calling Nsg w/her recommendations (x) - have to fup on this though
Anesthesia and other records - MRIs sent (x) - just have to send Visual Fields
Cardiology (x)

While this is actually the 2nd surgery and 3rd overall procedure ive had this year involving surgery/some form of anesthesia this has been much more involved than any of the previous recent surgeries or procedures probably due to multiple factors. 1. New hospital, new drs and thus new anesthesia team and 2.. Can affect cardiac issues due to being an implantable (though far less likely as the shunt is not in the bloodstream but in the CSF pathway) and length of surgery is an overall stressor on already stressed heart. From previous shunt surgeries my guess is this one will take between 2- 2 1/2 hrs but really dependent as much on anesthesia as anything. 3rd factor is because of my neck surgery/plates/screws and inability to flex neck backwards the intubation also is affecred in this fashion in addition to actual airway size. I plan to ask the anesthesia drs to write down their actual airway grade and assessment for me again. My Cardiologists words where regarding my PCP-NP wanting him to 'clear' me for surgery where "I dont "clear" pts but i'll give the ok and while your heart is an issue my biggest concern and a  very big concern at that is the actual anesthesia/intubation." (something to that effect)  Really with all this prep you would think this was a much bigger surgery but atleast they are thorough.

I thoroughly feel unprepared in a way im really not used to for this surgery - since I only spoke to the nurse of my Nsg after my dr spoke with my Adult Nsg (her colleague whom I 1st saw) and they decided what they wanted to do and not directly to my Nsg the only thing I really know is that surgery is tues and they are planning to replace the LP shunt with another LP shunt. I dont know why they chose doing another of this type vs VP (what her colleague the adult Nsg originally said he would likely recommend before I saw this Peds nsg and before the 2 drs spoke to each other to hash out a plan for trying to get on top of the headaches) . I dontt know if she is adding something different to the possible new LP shunt, I dont quite know if she is going to try a programmable (I have a fixed medium pressure shunt but they wondered if the H/A's werent bc of positional CSF (cerebrospinal fluid) backing up due to my other spine issues and also not working right w/laying down vs being upright had a difference) . I dont know why they chose this eoute - I guess I just feel a lack of control and while I do well trust these drs (anesthesia will have to be seen how they rank) anyone who knows me knows I like information, control and going along with the former being informed of everything!!

On a side note my Insur. Case Manager called today and she just wanted to let me know the surgery was authorized and also that Dean has approved my weekly ERT infusions for another year when the BDSSA contract expires June 30th and a new plan is begun July 1st. As of yet we are pretty certain of what the new plan is - same guidelines and a POS still but I thought it was really great that the insur approved my infusions and everything more than a month before the current plan year is even up and before our new plan is even signed!

The Cardiology appt went fine yesterday - I never quite feel like my Cardiologist is telling me everything or that he tells me one things and then dictates something completely different in his reports - he somewhat glossed over everything and it didnt help that his fellow who has been there since last summer has been less than helpful - she comes in before him (I HATE when drs do this!!!!!!!!!!!!! A complete waste of TIME!!) and you can tell she really isnt writing down what you tell her and she is more interested in your life not related to the appt which fine I dont mind sharing what I do because im proud of my accomplishments but if im paying (or rather my insur is paying) to see my dr id really like for him to just come in with her together and actually trust me!! Ive thought more and more about seeing the Cardiol. again in Mn even just 1x to get her opinion but havent decided. We'll see. It's not that I dont trust him it's that I just dont quite know if he quite knows 'enough' about MPS I - sure he knows some since he was the one to dx me but maybe I also need a cardiol. who knows 'alot'?

I will update more soon or atleast after I hear what time surgery is scheduled for fri and after I talk with anesthesia.
God Bless,

Erica