We are looking at mid-Jan for the Shunt surgery with the date likely to be Jan 14. From what I understand (i've emailed Dr.Bragg to clarify, i'll try to update this if I got anything wrong) the plan would be to move the valve over, still tunneled in the thoracic spine but not as centered I think? With the Peds General Surgeon (or that was her thought last week it is always possible she will change her mind and either do it solo or use someone else) move the distal, draining end back out of the peritoneum and to pleural space again. Potentially use a different valve though this is one of the parts I am least clear about as her Secretary couldn't say if she'd had time to talk to the Shunt rep or not about our issues.
I talked to my PCP (mychart messaging, similar to email) and she commented back regarding what she would recommend w/the Coumadin dosing leading up to this surgery (any surgery apparently), though i'll also have to see her sometime before that surgery for pre-op. ( "Usually for bridging we have you stop coumadin 5-7 days prior to surgery and start Lovenox 3-5 days prior to surgery and hold the Lovenox morning of surgery. And then after surgery do coumadin and Lovenox until inr at goal again. When we get closer to the date I will ensure I talk with your cardiologist to make sure they are agreeable." - Dr.Bragg has essentially said the same things especially about post-op INR management and has always just commented she would use that time to do any adjustments to new valve (programmable settings) and initiate/wean from PCA pump. I am not entirely sure if post-op is done the same for this type of surgery as it was w the heart surgeries but there instead of lovenox injections they did heparin via the IV and Coumadin then tested INR every morning till in-range.
I did talk to the Cardiology Nurse and got approval to start CoQ10 but need to do Labs for INR (blood thinner level) mid-next week instead of waiting till the following weeks Cardiology Appt. (labs would be done then too) as CoQ10 can affect Coumadin dosing.
I also just emailed the Cardiology NP to ask if we can switch to brand name Coumadin so that the inactive/active ingredients never change whereas with generic Warfarin the inactive ingredients change anytime the supplier/brand changes at the Pharmacy which I think is affecting the issues. Most meds generic isn't an issue but there are a few that it can pose problems for some people. I do take another drug as brand name though it is also available as a generic due to the generic not having worked as well and the prior auth's required for this where fairly straight forward. We'll see. :)
This last Sat, I did go canvassing with St.John's for a new start-up WELS Church in Mount Horeb. The experience was fun and nice to be around Church family for that day. As well although the weather was drizzly so we didn't run in to many people while leaving the brochure in doorways it was still interesting to learn the various "do's and don'ts" of canvassing and hear the history of this new Church and the fill-in Pastor we worked with. I would do it again.
We had our monthly Sunday School meeting Sunday night to go over Dec. and Jan's class lessons which also was informative (as usual) and so nice to be around others who share the same convictions that I do. I can't explain what it means to have this 'family' but it has been a good thing. Non of us are perfect but we share a bond in a way despite all of our very different paths in life I guess, maybe? I know 2 of the Sun School Teachers have become very good friends despite our age differences and I feel like I've been able to lean on them in a way during times when all 3 of us are dealing w our own struggles (both lost either a husband at a younger age or a daughter who was then my age) but we still (I think) make each other laugh and not forget we all are only human.
I have been pretty busy when at home trying to track down information for GSF, working on some information for the Church Committee and putting together this weekend Sun School lesson in-between having had appts everyday but today. Tonight I am meeting friends in Sun Prairie for dinner! :) Looking fwd to seeing them!
Otherwise med stuff has really centered around Cardiac Rehab this week other than Infusion which continues to go fine. I have sloowwllly been increasing speeds on the treadmill which I usually walk for about 20mins and then do the spin bike in-which I've been slowly able to increase range. I think I've said it before but I like the treadmill better than the spin bike though both are not the most-comfortable on mid-spine! The older guys and the ladies in class are funny to chat with and between them and the 3 Nurses/EP's who float around monitoring all of us, making suggestions the time does typically (thankfully!) go fairly fast.
Tomorrow Sara, Mom, Zander, Bella (nephew and niece) and I are going shopping and then Z is spending the night here. I teach Sun School Sunday morning before Church so Z will come along for that. I have an Advent craft (Advent starts after Thanksgiving but we don't have SS the Sun after Thanksgiving) and the snack we made for the kids for this week so hopefully he does atleast as well as last time! Often when Connie one of my good friends and I teach on the same Sunday we'll then sit in church together and Z seems to like her. :)
Thanks for stopping by,
Erica
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