After ERT (Infusion) which is also at Children's I headed over to CHW's main hospital for the Pre-op Appt which ended up being about 1:45 to check-in today. This ended up consisting of the actual pre-op Appt/eval with the Nurse and PA (both very nice, the Nurse couldn't say enough good things about the Anesthesiologist I have tmrw and talked about her own daughter having had open heart surgery 14+ yrs ago at CHW w the other Cardiac Surgeon and what a great experience they had. She after going over meds to take tonight and tomorrow morning, what time to be at the hospital, what additional tests they needed to get (wayyyyy more in-depth than the Pre-op Appt that was done at FMLH) and some of what to expect in the morning before surgery and then after surgery. It looks like I check in at 6:30 with surgery at 8:00 and they expect it to take about 7.5 hrs due to doing an aortic root expansion (to better fit in the mechanical aortic valve) and then place the mechanical valve once they have the old-diseased valve removed. As I've mentioned before they will look at the mitral valve once in-surgery and on bi-pass but are not expecting they will have to replace this particular valve right now. Post-surgery you go directly to the Cardiac ICU bi-passing post-op care altogether and the breathing tube will be removed either a few hours post-surgery or could be a day or later just depends on how things look. I asked about post-surgery if you end up on the same cardiac meds as what you come in on (can't wait to get off the high 2x's daily Lasix especially) and she commented she would expect these to stay the same once I went home although it was possible the Lasix may change and then will also add the Coumadin (blood thinner).
Other tests that they did today included the labs and blood typing, an Ultrasound to look at the femoral (groin) artery in-case they would need to do a catherization for any reason and repeat Chest Xray - if you see a green-glowy-ish person in the dark it probably is me. =) The PA went over the aortic root expansion surgery, the chest tubes, shunts/neck surgeries more in-depth as well as how he and my Surgeon had talked this morning about what would need to be watched out for (Shunts) and what avoided (Port) during tomorrow's surgery in addition to expected time line for when chest tubes and temporary pacemaker wires may come out. On a side note he did say it is possible the side chest tubes could be out by the time I am awake - I HOPE SO!!! That WOULD BE FANTASTIC! I know it may not happen but would be awesome no-less. =)
My Mom plans to update this blog and hopefully will do a few short updates on my fb page throughout the surgery - you can sign up for email alerts or as a 'follower' if you'd like automatic alerts from surgery. =) I hope to be back updating this soon!? =)
See below for a few updates from earlier/late last week but thanks for stopping by,
- On a side note one of my Pastor's plans to come in the afternoon and sit with my parents and stay while I am in surgery (as he has done in the past) which I thought was pretty kind on his part since I would imagine waiting could be kind of tedious and boring.
"To God be the glory all things will be done",
Erica
Written pre-Sunday 7/21
All (most) ducks are in a row, have reports I need/wanted to take to Monday's post-ERT, pre-Tues Valve replacement surgery pre-op Appt. including the past Anesthesia records, Dr.Bragg's most recent notes. I think the clinic has these already but also the notes from my Neuro-Endocrine dr as well with her pre/during/post Cardiac surgery-Cortisol recommendations. I feel best about any surgery doing what I can on my end to make sure all ducks are in a row so I've just really tried not to think to much about the post-surgery waking up/recovery itself. I took my cats over to my parents tonight and so they are settled there and I've pretty well got my Apt settled/cleaned in a way it will be set when I do eventually come home - that part I can't wait for!! :)
I also wrote a couple things down to remind the Anesthesiologist(s) of on Monday/Tues as well as the Cardiac Surgeon INCLUDING to STAY AWAY FROM the Thoracic Peritoneal shunt tubing which Dr.Bragg has brought up several times to remind the drs they will be working (with the chest tubes) in the same areas as this particular shunts catheter (the catheter though no longer in the pleural space for now does still run over the lung space where chest tubes are placed and to make sure they do not accidentally cut or otherwise adversely affect the thoracic shunt as we'd be in a bad way, especially given Dr.Bragg is in Madison and the surgery is in Milw.!
On a completely different note and somewhat un-related I can't say enough about my PCP, she has only been on my team for just under a year now and seems to have learned a lot (as I think I've written about before) about the MPS, underlying issues and how all of it impacts each other both big and small with the various surgeries. I was reading her pre-op note from the Hand and Shunt surgeries in June and the day before the Hand surgery just out of concern (bc of the heart failure) she had called my Cardiologist to make sure he was still ok with my going ahead w the hand surgery (her words "a high risk patient for a low risk surgery") and to confirm his wishes with the anesthesia so she could then directly relay that information to my Hand Surgeon whom she also called. She wrote a lot of the same thoughts and notes regarding the Shunt revision "a medium risk surgery, high risk patient in a required surgery in order to move ahead with the cardiac valve replacement surgery." I just appreciate that she factors all of the big and little things in, that she keeps me so updated on her thoughts and she does an amazing job actually of communicating with my various specialists as needed as well as updating all the little things in my health history. I am sure she is busy in her practice and yet she takes the time to go out of her way to keep me updated, talk to various of my specialists and really try to help.
Since I do vent quite a bit about healthcare I think I should probably be fair and share the good aspects of my care and the good providers I have on my team as well! - Be well all, thanks for stopping by. - ET.
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