Tuesday, July 19, 2016

Heart Cath / Heart Ablation Study 7/20 at Children's Hosp.

There where multiple things I meant to update here about but admittedly I didn't write any of them down and so now I am drawing a blank on what exactly it was I meant to write!

Non-the-less the Heart Cath and Ablation Study (to try and slow the heart rhythm,  (area of the sinus node) and measure pressures from within the heart and lungs + if I remember right Cardiology was going to use Xray and Fluoroscopic guidance to get a better look at the chest wall or maybe it was the lung space or heck it may have been both. I honestly can't remember but that was/is slated to be done while in the Cardiac (Heart) Cath Lab to look at the chest wall area that has been abnormally elevated since Jan's 3rd Open Heart Surgery.

Ironically this Heart procedures are almost exactly 3 yrs (minus 3 days) since the 1st of the 3 Open Heart Surgeries occurred w/the 1st OHS (AVR, Konno procedure) being July 23, 07'. I don't remember the exact date but last yr., (may have been the 21st) we did the Heart cath and Heart Rhythm Studies (to get a better idea for the new Heart rate/Heart failure med and to look at the Mitral valve  for the expected MV replacement, which at this time a yr ago we knew it would occur just not how soon)..

Schedule wise I have to be at CHW at 6:30 with the procedures slated to start at 8. I am a bit surprised (but also totally ok with!) Anesthesia for the prior heart surgeries and Heart Rhythm Study last yr (both the Open Heart and the earlier, separate Heart Cath) asked that I get to the pre-op area 2hrs ahead of time so they could access Port there (my Anesthesia dr ok'd my coming in with it accessed and said she plans to place an actual peripheral (in the vein) IV once they start Anesthesia as that is more practical for her to use.
I am game with that, just glad she's letting me use the Port initially as IVs themselves don't bother me it's the fact that more often than not placing an IV is like a hunt and search (my veins look great but roll and often the vein will blow (collapse in a sense)  when trying to get IVs in. Sometimes the docs have better luck but since I had the Port and had Infusion today I'd rather they use this initially and do their hunting (for a good vein) when I am out. =)

I am also glad it's the same Anesthesia dr I've used before as I could have done these procedures a wk after my Team decided we where going to go ahead but opted to wait so Dr.Taylor would be available. Many other MPS Individuals or Families understand this (having an doc familiar w airway is 1/2 the battle with any procedures or surgery).

Otherwise it's mainly just getting the Steroid 60mins before the procedure starts, signing consents and going over everything once I am there.

 If you would please pray for all to go well and this to in fact help bring heart rate down! The biggest risk both bc I've had so many Heart surgeries and in MPS our anatomy tends to do it's own thing is this procedure causing need for a Pacemaker (my Heart Rhythm doc has mentioned the potential several times) but I'm not to worried and if it did end up with that well then we'd figure it out in the setting of the programmable shunts and the need for imaging for bone/spine/brain in MPS.
I am staying on Coumadin for the procedures though my level  (big surprise lately, I guess, right?!?) was low (even lower than last wk) at 1.78 or something around there.
Once the heart stuff is done my Team will adjust the dose and we'll once again try to figure it all out. - Dr.Bragg did msg that she received a message from her former Partner and he is going to ask his Office Team  (her former Team)  to schedule an appt "ASAP". - I am truly grateful to Dr.Bragg for her help with all this - still nervous but thankful to her!

I'll try to update Weds night or Thurs., for info on the actual procedures see my last post.

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