Sorry I wrote this last wk but forgot to come back and publish it..
Tues surgery is scheduled for 3pm with arrival at 1pm. If lucky surgery will be on time?
I am bummed to say the least about this - mostly just b/c the ridiculous 'no eating after midnight' no matter that actual surgery isn't until 3:00 (1:00PM arrival) which if it runs as afternoon cases most generally do at UW means 3pm will likely be several hrs later. I hope not but realistically this is more often the case. I NEVER understand why if surgery is at 7am 1 can eat till midnight but if surgery is at 3pm one is still supposed to stop eating at midningt? I'm just venting, please don't take this as my being pissed off, I really just need to vent. There is just a lot that frustrates me and writing is my outlet.
People say 'well if you get called in earlier' but the thing is I'm not in-pt so wouldn't be at UW anyways... ARGGHHH!!!! Hard candy it will be.
It's definitely been a lot of sorting and coordinating this wk for this surgery to make sure Neurosurgery had what they needed from Cardiology (Fri must have talked to/emailed with or left voice mails for my Cardiology Team and the Neurosurgery Nurses no less than 4 or so times each)! - Was crazy (!!) though I also have to say each office and the NPs I was working with where AWESOME about helping to make sure each side (Cardiology/Neurosurgery) had what they needed for Tues surgery. For that I am grateful and really appreciate both Team care and for that matter each NPs that I talked to would ask how things where going (not necessary but nice).
Definitely seemed ALOT messier this time then most other recent surgeries but by the end of today, I think (hope, lol) everything is in place.. There are a few things I wonder about but can only pray, right?... I think it will be a very, very, VERY long time till I will stop wishing Dr.Bragg where just here and am sure next wk, in pre-op, in the OR (especially as being sedated/anesthesia) and then post op in-pt i'll wish she where there bc she listened, she knew and she made things run smooth. I'm sure some think 'she's not coming back so get over it' which fair enough if they do but as any rare disease Pt who handles their own care and who has a good Team knows when we have a good Provider(s) ir is genuinely hard to lose them!
She just knew the little things she did to make various people (Residents?) back off, or not mess with things (Cardiology meds? Stress dose steroid for surgeries?) or make sure post op was managed well pain wise (often more about joints than is about actual incisional stuff or as much about body as it is about incisional stuff from positioning and my body just not doing to many positions to well).
I can't change it but sure doesn't mean I wont miss having her who just knew so much about making things go well AND she listened + didn't try to pretend she knew what she didn't.
Non-the-less, everything happens for a reason (I guess) and I guess I just have to trust? Is hard but trying. Sometimes easier than others.
Phoenix -
- On a side note, arrangements are made to fly out to Phoenix next mo (Oct) for 3 days (Fri-Sun) (fly in Fri, mtng Sat., fly home Sun afternoon). Not exactly the best timing with Sun School just starting and potentially missing the 1st day (hoping not) next Sun, 2 wks later we're supposed to go camping (not entirely my favorite thing, lol) and then this in early Oct. I do have the person who subs for me lined up for the late Sept and Oct dates. Playing it by ear for next wk and just hoping i'll be there! I have my lesson written up (worked on it at ERT last wk, to get it done ahead of time). So we'll see?
Anesthesia - Airway -
As far as anesthesia (airway) goes (and fully hoping it IS someone familiar with my airway!) i'll Print the Anesthesia information from Dr.Taylor from this past Heart procedure (Heart Cath / Heart Ablation) to give to the Anesthesia dr. assigned to my case. At UW thankfully it is usually someone assigned that has had me before but since she (Dr.Taylor) had increased difficulty this last time with airway (she sent what she found, and what equipment she specifically ended up using which i'll share with the Team next wk.) I figure it makes sense to share that information with the Team that will have me, to try to make it perhaps easier for them and perhaps they can use the same things Dr.Taylor did to make intubation/airway easier. Hopefully it's someone that is amenable to just following another drs. suggestions! Most of the Anesthsia drs that have been on my Team at UW have been pretty good about this sort of thing (following what's worked easiest in the past).
Cardiology - Blood Thinners / Surgery Plans
As far as pre/post surgery and what Cardiology told my Primary dr., the plan is to stop the Lovenox (Enoxperin) injections the night before surgery (tonight) and skip the morning dose then either this injection is to be restarted Tues night or the Neurosurgery Team will have to start a heparin drip until they are comfortable restarting the injections.
This is the case bc we have the mitral valve and aortic valves now so with mitral valve requires more careful monitoring and (if I remember right) due to higher blood flow blood has to be thinner so thus no window like there could be when I had just the aortic valve. Before we could be off the Coumadin for upwards of (I believe it was, right off hand) 3 days before and up to 5days after).
The Neurosurgery Team has these instructions and when the NP messaged me the other day to ask about getting INR checked the day before surgery (I'm guessing she hadn't yet seen these instructions/plan) I let her know this info as well so that part should be set. Lol, I am not a worrying type but have to admit I think I am going to worry about this blood thinner-post surgery aspect till it is set in stone the day of surgery and I am probably more stressing about Port access and what to do with this.
I talked to the Neurosurgery NP (she's kind of amazing, she's already talked to the Neurosurgery (D6-4) Pharmacy and gotten the Aldurazyme ordered for next wk + that was shipped earlier last wk per my my Case Manager at Genzyme. When the floor Pharmacists called Fri they confirmed they had the Aldurazyme at UW.
Port Access - Access Team (Timing w/Holiday wknd)
The thing I am stressing a bit about is this same NP talked to the Access Team at UW who told her they can be paged the morning of surgery to come down and access the Port but they can't set up a time ahead of time. This simply (hopefully simple!) means as soon as I got to UW and checked in I'd have to have my pre-op Nurse page the Access Team to come down which would be fine in and of itself and then I'd just have to hope they could come down before and access it (the Port) atleast an hour before the actual surgery as the steroid has to be given in a specific time frame.
I talked to my Primary dr and she's going to put in an order with the Home Health Company so in case of future surgeries where it falls on a weird day I can just get the flush and heparin for the Port from home health but this time I am just going to have the Port accessed the day of surgery. Makes me a tad nervous but hoping it works out ok!?!
Stress dose Steroids:
In any case these are the stress dose steroid instructions, I am sharing here as much so I have a simple place to access them (i'll print a copy to but in case I don't have that on hand) to look and comfirm what post op dosing is. I admittedly even after all these yrs still have to look and see the dosing schedule when there are questions. That's a little bit sad actually, probably given in just the past 5 yrs I've been through more than 45 surgeries and tmrw's surgery is #40 (overall) for the shunts!
In any case will update sometime this wk after Tues surgery. If you believe in prayer please pray there is an easy answer and an easy fix with the VP Shunt!
Thanks for stopping by,
Erica
PS This is completely (sort of) unrelated but I feel like people judge a person for trying to stay busy and sharing what they are experiencing and almost especially for not whining constantly about what they are feeling. Why is this? Bc I share what I'm feeling but not every other word is a bitch about what isn't being done or whose not doing enough or how bad I'm feeling (I feel like I vent enough but I also try to apologize for doing this very thing, I don't want to be insufferable?!?) Yet I feel like at times people expect bc 1 goes about their life, trying to stay busy, being involved in things that 'she must not feel that bad' and why is that? How can we possibly judge what another person feels? Why do we care what another person shares? In reality shouldn't/isn't it about trying to help each other?
Stress Dose Steroid Scheduling:
Due to patient's adrenal insufficiency, stress dose steroids will be required for her surgical procedure.
Day of surgery ---Hydrocortisone 100 mg IV Q 8 hours. The first dose should be one hour prior to the surgery.
If hemodynamically stable then:
POD #1---Hydrocortisone 50 mg IV BID or 50 mg PO BID
POD #2---Hydrocortisone 30 mg PO BID
POD #3---Hydrocortisone---20 mg PO in AM and 10 mg PO in PM
POD #4---Hydrocortisone---resume regular daily dosing of 10 mg in the AM and 5 mg in the PM.
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