Friday, December 16, 2016

Sinus Node (Modification) Ablation done -

Our goal with re-trying this sinus node modification (ablation but intent not to completely kill/ablate the sinus node as that's the heart natural pacemaker)  was to get Heart rate in the 70s. This worked for  about  the 1st 24+ hrs (varied a little) where heart rate had seemed to settle in to the 80s.  Had Heart rate stayed there Dr.Kovach said he would not likely repeat the procedure I think if I remember right b/c the risk of permanent damage to the sinus node rises some each time and 80s would still have been 10-20 beat drop from what we've averaged (90s-110s for the most part).

The Ablation itself went somewhat ahead of time which is always a HUGE bonus (less time to think about all the various food I want b/c I can't have it 😁  ). Maybe this going ahead of time was a small pay back for the last surgery having been hours behind? =) Who knows but non-the-less is always nice!
 I have to say to I'm always a little impressed, with Dr.Taylor and her anesthesia approach, it's like 1 min we're talking or I'm aware and the next second I'm not. At UW (where shunt surgeries are) I'm not sure what's different but I fight that anesthesia stuff to the last bit, lol trying to keep my eyes open. It's a control thing, I'm sure. A bit like not taking the pre-OR sedation meds they can offer (on this Dr.Taylor often makes comment along the line 'she's cool as a cucumber', lol or 'we don't have to worry about her'. I just like knowing what's going on as long as possible. =)
 I always say and seriously wonder (but not sure I really want to know!) what I say when I'm out but not really out. I can remember a few times Dr.Bragg would talk about conversations I was having or things I'd ask (and for that matter with the last surgery - can't remember if it was the last OHS back in Jan, almost a yr ago or if it was when we where doing the last ablation but I apparently asked Dr.Taylor if she'd/they could take pictures in the OR). So weird on my part!

So anyways the ablation worked initially, like the 1st time we tried though this time seemed to last for about 24hrs (maybe it was about the same last time, I actually can't remember)  and has steadily climbed and stayed back up in the 90s to 100s since being home. I know Dr.Kovach said it's not to unusual with the sinus node to have to do repeat ablations but it's still kind of a bummer! If only the meds would work like they used to, pre-the MVR replacement (had better control of heart rate and thus heart function).

I'm not to sure what next step will be, but I know further ablations are on the table as 1 option. It's not even like they hurt or are terrible, really the worst is the 4hr period I have to lay flat after (I thought this time might be a bit better but it seems even when the shunts are good or in current case 1 is good and 1 is leaking causing it to be a bad/good my body just doesn't like to be flat and the shunts just don't drain particularly well laying flat.

On a side note, Dr.Taylor (anesthesia, my airway dr. for all these heart procedures and open heart surgeries) mentioned while we where waiting in pre-op that she had a Fellow she asked to come in on the case with her. She wasn't yet sure if he was going to and I forgot to ask her when she stopped by Thurs morning, the day after if this Fellow had been in on the case with her or not. (usually she  just stops by to go over what she used, her findings, see how things are).
She has been interested in doing a small group presentation or write up (honestly thinking about it I can't remember which it was!)  on our history together, her airway findings and I think changes she's dealt with through the various (three) surgeries and 3 procedures.
In all that I just think it's funny though definitely nice to have had her for it all b/c she's become so familiar with my case, with MPS that she keeps a running tally of how many surgeries and procedures we've done together and knows when the 1st and subsequent ones where.

They did not do measurements of the various heart functions with this Cath/Ablation so I have to find out from Dr.Earing if we in fact have to do a repeat Echo before I see him (beginning of Jan., after the shunt surgery) or if we are good there. He had mentioned something about this at the last Appt but I can't remember what exactly he said and it's not listed in his clinic note. Either way not a huge deal.
I didn't think of it at the time Dr.Kovach mentioned he was going to place cathether in both sides of my groin (each side of body) as well as 1 in my neck (but that 1 that was placed in my neck is where my VPL Shunt used to be until that was removed last month and instead tunneled down the back of my neck and my back to pleural (lung) space. I am curious if getting the Heart Cath in was easy or any issues. If I remember (lol, questionable) i'll ask Dr.Kovach this at the f/up appt. in a couple wks.

Airway wise Dr.Taylor used LMA which in my case is much easier placement (does not require complete airway access with breathing tube). For whatever reason whether related to that tube placement or related to the Cath down my neck but part of my tongue is numb. It's a very weird feeling (lack of feeling)!
 Otherwise they where checking various labs yesterday which the wrong Lovenox test was put in (I didn't even know they could check that, who knew!) I know my Peds Neurosurgery Team has asked about that a few times.
The other one that came back low (significantly low I guess per the ACHD Fellow) was iron. We've battled this level on and off since the 3rd OHS back in Jan. so once the shunt surgery is done i'll go back on it again. Yay to another pill although atleast I found a brand at the health store that doesn't have the side effects that prescription or retail store bought iron typically has.

I joked to Dr.Kovach and the 1 NP (separately) yesterday, someday we'll get off more of these heart meds!?!? LOL, I can keep telling myself that anyways. =D

 I think this coming wk I just have botox injections, which I'd rescheduled from last month. I have to double check but wouldn't mind a  fairly quiet wk appts wise (ERT Infusion Monday, Botox whichever day it is, may be Tues.) but have to check that all.

                                                           Sunday School

Tomorrow (Sunday) is our Sunday School Christmas party - I'd done these or something similar with my 3rd/4th grade kids a few yrs ago but we're making candy cane ornaments with R + Wh. beads, fuzzy sticks (can't think of what the actual name of these are), ribbon and bells.  I found a story related to Christianity and what the Candy Cane means so printed that out and made small enough copies to tie 1 to each kiddos ornament with the bell and ribbon. The other ornaments in the above pic are ones my kids did last wk, our story was 'The Birth of John'.

In any case, thanks for stopping by,


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