Thursday, June 20, 2013

TPL Shunt revision 5:30/7:30 (Friday), Hand Surgery, Cardiothoracic Surgery/Cardiology Appt updates

This week I feel incredibly weary, tired, and although I probably seem a little down to some around me I actually am not, just very tired which brings out my venting side.

The shunt surgery is scheduled for 5:30 arrival and 7:30 OR time. The other Nurse that works with Dr.Bragg called today saying that Anesthesia was asking them for the specific Echo report and details so she was going to contact my Cardiologist's Secretary though they must have gotten this sorted out. Usually it is 1 of 3 or 4 Anesthesiologists who have my case so I imagine they just want to know if there was any changes though even Catie said "we have the Cardiology note which lists all the Echo details and history and aren't sure why that isn't enough".

The Cardiothoracic Surgeon Appt went ok this morning; I honestly was so tired I felt like I was in a daze (to many things on my mind and a long day of other appts/stuff after that appt so my I felt like I was trying to process the info and look interested while also wishing I was elsewhere! I think my brain has been going at a hundred and 50 decibals this week, running through everything I still wanted or needed to get done before tomorrow. I even said to the Surgeon that I just was tired so I honestly didn't have a lot of questions to which he said if I thought of any after today to just email or call and talk to him and ask. The basics are we definitely agreed on a mechanical valve (what my Cardiologist recommended to him and what other MPS drs have recommended to me). We'll for sure replace the Aortic valve; the mitral valve should be ok for now but they'll look at it while in replacing the aortic valve. He ordered an Echo for the day of pre-op as there is some specific measurement related to the valve size he is looking for and not listed on previous Echo's, they will also do a trans-esophageal (down the throat) Echo once asleep before they start the valve replacement to get a different, more direct view. Oddly he didn't mention the pre-op Echo but I received a mychart message so called his Secretary to verify if this was needed as I then had to reschedule something else the morning it is set for. The actual surgery they expect if no complications to take about 6-8 hours (including anesthesia) and he thought the hardest part may be equaling out Coumadin/INR levels post-op but also said this is usually easier (less med needed generally) in aortic valves than with mitral valves. He also mentioned they may be able to wean off anesthesia within a few hours of surgery but wouldn't do so till stable in the CICU. In-patient could  be as little as a week; I know my Cardiologist felt the post-op would be the hardest so I have to admit I hope it is that short but knowing w the shunt surgeries how long some in-patient, post-op stays have been and the heart being affected by so many more of the underlying MPS issues (restrictive lung dx, autonomic, cortisol-steroid and shunts) it will be  more of a surprise if it really is,  I guess we will find out soon enough. No matter I just hope it goes well and everyone (specialist wise) plays nice together as they have been; that the shunts are no issues during and that the Port (which Dr.Mitchell thought they would be able to work around) would be ok. He also said that a lot of times due to hypertrophy of the heart in severe cases of stenosis like my case with such chronic, low blood pressure/heartrate that post-surgery patients often will say their heart feels like it is going at warp speed but also have a ton more energy. It freaks just about everyone out but I am used to the low BP/heart rate by now (86/50 today) though will gladly take more energy post-op; maybe that will make the healing easier!?

I emailed back and forth with Dr.Bragg's Nurse and she is verifying the Aldurazyme dosing and fluid (amount) mix and although they where going to order prior to my surgery Friday they now plan secondary to hospital policy/patient census requirements order the Aldurazyme once I am admitted and in-house. We should still be able to get the med for Monday or if nothing else even Tuesday will do. I am happy regardless that Lisa is helpful and she + Sue (NP) are helping to coordinate getting this (extremely expensive) drug there so I won't miss while in-patient!

I met with my Insurance-Nurse Case Manager today which was nice; the other day we had agreed we should keep in touch once she leaves her CM position at DHP in a few weeks (going to be a Nurse discharge planner at one of the other bigger hospitals in Madison) but today she wrote down her cell # and told me I should definitely call her once in awhile, keep her up-to-date. We took a picture together and she had moved around last Fall (actually about 30 mins from where I live, a 1 hour+ commute to Madison) and mentioned if I was ever headed to the Dells to let her know she'd love to meet either of my nephews and thought they would really like her Farm. Neat! =) I will definitely miss having her on my team; like I said in the last post, we didn't always agree but she moved mountains to get things figured out for my care and especially for those providers of mine who where out-of-network, in-network exceptions! I am hopefully, cautiously optimistic that whoever she has take over my case will be as helpful/caring/useful as she was, I will definitely miss having her!
                                                       Peggy (CM) and I

The Hand Appt today was amusing; I still haven't talked to the actual Surgeon and after the PA looked at the incision she had the MA (Yes, the Medical Assistant!) remove the stitches which I could have smacked her; I truly try to give people a chance but in my opinion an MA has no business removing stitches (I have no problem if an PA, NP or Nurse does) and to boot she didn't once wash her hands OR wear exam gloves during! EEWW!! The OT and PA recommended 2 more weeks in the splint though I can take it off to shower (AWESOME!!!) as long as I am not doing anything with to direct of contact for the 1st week on that incision and then slowly transition out of the splint. Under the splint is a sleeve which should also help w incision sensitivity and they recommended wearing this if need be after the splint is done for a bit to help though I do have a scar-incision type dressing that just lays directly on the incision site to help scar tissue and can use small amounts of Vit. E oil/Cocoa Butter. The PA recommended following up (finally) with the Surgeon in 6 wks which would fall the week after the Cardiac Valve surgery so I mentioned this and she was ok with doing it the week before the CV surgery. So fast fwd to making the appt w the Secretary and I mention needing to make the fup surgery before the 7/24 surgery and she (Secretary) seemed like she was upset I couldn't do the only 2 dates the Surgeon was available the end of July? I just wanted to ask; what am I supposed to do reschedule the CV surgery for a Hand fup? Grr!! Anyways they couldn't apparently make anything work w Dr.Bliss so the fup is back w the PA? Odd, just very odd set-up! Like I said I have no problem who fups are with but I would have liked to talked to the Surgeon and find out his opinion of the surgery outcome atleast once!?

Say a prayer tomorrow (Friday) surgery goes well and no compications!
Anyone who reads this who happens to come in contact with me I apologize ahead of time if I am crabby; i'll try not to be but with little sleep and already exhausted...
Thanks for stopping by,

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