Tuesday, October 21, 2014

Pre-op Appt, VP Shunt Surgery Thurs. 10/30

Today's pre-op Appt went well, nothing to special. The Appt was with my actual PMD(she's very part time but her nurses will add me on to her schedule) so went relatively quickly. We where able to use labs we'd just done several weeks ago so not much had to be done.
EKG was done at my Cardiology Appt last wk so that to did not have to be done. As far as the cardiac symptoms/breathing issues she just commented she'd have wanted a Cardiology consult had I not just seen them (she sent me) and so she was glad we didn't have to try to get that done in time.
Med wise unless Cardiology says otherwise (PMD was going to call them after the appt.) and unless Dr.Bragg/her office would say otherwise before next Thurs's surgery i'll stop Coumadin which is the blood thinner 3 days ahead of surgery. Med wise i'll take Lasix and all cardiac meds the morning of surgery (to prevent heart-fluid overload) though she wasn't certain about the baby aspirin. She feels it should be taken but is Cardiology's call.
In the past as far as knowing if the blood thinner was in-range for the day of surgery Dr.Bragg has done several different approaches from my being admitted to the floor the day before surgery to having me come early the day of surgery and doing labs several hours before at her hospital. The plan this time is admit the day of surgery and I assume just check INR in the 2 hr window between surgery check in and going back to the OR. I assume if they want something different they'll decide between now and then.
Weds. i'll be in Milw. and since it's just easier i'll have my Infusion nurse access my Port (vs leaving it accessed after Monday's infusion and then having to change the dressing when I shower each day leading up to Thurs.) so that is done and no need to convince Anesthesia or a Nurse to access it vs. starting a peripheral. My infusion Nurses real jobs are on the Access Team at Children's so it works out well; typically they will just add me to their schedule, i'll come in and takes about 15-20mins. Having the Port accessed before I come in saves a lot of frustration the day of surgery as Anesthesia usually is against accessing/using the Port and honestly even this way sometimes they only way they'll use it is if Dr.Bragg asks them (she has seen multiple attempts at peripheral IVs).
As far as ERT since surgery is on a Thurs., I may be out in time to get my normal infusion at CHW but per an agreement/arrangement with UW's D6-4 Neurosurgery Pharmacy I call and give them a heads up anytime i'll be having surgery so they can order the enzyme drug to have on hand. This way if I am in-pt I can won't miss. I've not yet called to let them know but the Aldurazyme then gets mixed by the Pharmacy and infused by the floor Nurse(s) using a slightly different ramp up rate than we use at CHW (for whatever reason it runs at a much faster pace if we use the ramp up rate I normally at at CHW so one of the Nurses had re-calculated their rate and works well).
As far as surgery I am just praying we figure this out, that any occlusion would be a simple find/fix and if need be Dr.Bragg works down the entire shunt system to rule out it isn't further down in the distal end. I trust her though and know she'll do whatever she feels is best.
I guess if there's anything else i'll update otherwise surgery is next Thurs. the 30th.
I've attached below a few copies of my Sun School kids at the end of class the past 2 wks. I typically take pics for various Church purposes and then make copies for the kids/their parents which the kids seem to really like having.
As difficult as mornings are these days (I feel quite out of sorts actually and in a zone sort of) I try to get up a bit earlier on Sundays so some of the symptoms are atleast partially worn off and honestly my kids are pretty easy going. I've also figured out how to teach without having to do a ton of actual talking the entire time.
In any case thanks for stopping by,
'The Passover'

'Moses leads the Israelites'

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