Friday, July 22, 2016

Modified Sinus Node Ablation / Heart Cath - Anesthesia (an Update, post [post procedure).

The Heart Cath and ablation study to (to try and slow slow rhe heart rhythm / modify the hearts "normal pacemaker" and measure pressures from within the heart and lungs went ok. Inutial good results which my Team was happy about (heart rate came down to the 80s) but then heart rate by Weds night was back up in the 100s and has stayed there since.
A few of the heart meds have been restarted (ones that work on heart muscle function and secondarily heart rate if I remember right)
After a 1 night stay I was able to go home Thurs (yay) and will fup in a month. Should heart rate stay up as it has been then Dr.Kovach/Team will trial re-starting the Ivabradine which he said there's a chance given it's in a sense a new heart rhythm now it may work as it did prior to Jan's Mitral Valve replacement/Heart Surgery.
He did lay out his plan though if heart rate stays up and the Ivabradine would not work which plan would be to repeat Weds Heart procedures again but in a more aggressive Sinus Node ablation (bigger risk of damage to natural pacemaker and need for actual pacemaker which would not be ideal but he laid out his thinking on how this could work if we did end up in this situation. Given my VPL Shunt runs down the R side and the Port (access device) runs down the L side and the  2 shunts (VPL and LP (lumbar spine placed) are programmable (programmed by magnets) which is also per Dr.Kovach how Pacemaker are programmed it would be a tad tricky but he feels we'd be able to sort this and make it work. I know he's been thinking about this even before the modified sinus node ablation we did on Weds so I trust if it where to happen (but hopefully won't) he and my Team would work it out.

As far as Airway this ended up being under general anesthesia (which Dr.Taylor told me ahead of time in pre-op) and went ok.
When she came by on Thurs morning, the day after the procedures  Dr.Taylor, who I've written about before has done all of my prior Heart surgeries and procedures (6 total, 3 OHS, 3 procedures as of yesterday, lol she was ticking them off on her fingers which was kind of funny) explained what she ended up doing (actual endocatracheal tube placement was really difficult  even with equipment we use to ease placement (glidescope) so she switched to an LMA with a newer Pediatric (kids) size tube/mask and I think she said she had a easier time with that. It seems airway has worsened quite a bit in the period Dr.Taylor has been my Anesthesia dr (at CHW, 3yrs)  as she has pictures for instance from 3yrs ago and must have looked back at those and said the difference was pretty obvious from 3yrs ago (this wk ironically) to Weds's airway changes. Good old MPS, it doesn't leave much unaffected/unchanged even despite the weekly IV Enzyme replacement infusions (man made version to replace  what my body does not make). It's known of course ERT doesn't cross the blood/brain barrier (brain/spine) and get in to the heart or other areas but doesn't always mean it's any less frustrating (if that's the right/best word?) when changes do keep occurring.
Apparently  though I have to admit I do not remember this at all (Dr.Taylor, the Nurses and I where joking in the Cath Lab Weds as they where getting everything set/hooked up before starting anesthesia that I was taking no responsibility for anything I said during the semi-conscious, pre-complete sedation (intubated) period. I stand by that (back in Jan I apparently asked her if she'd take pictures which she did with her phone and later emailed to me. Funny but nice really even if so weird on my part!).

Alas though it seems immediately after the Cath/Ablation and due to concern with my positional headaches and inability to lie flat (as they where getting ready/hooking everything up they allowed me to be slightly propped up) but following the procedure it seems they kept sedation going for the period following in which I was required to lay flat. I completely did not realize this and have to admit, although I was in the CVICU for my in-pt stay (Cardiac ICU) i'd have said I was awake during that 4hrs I was required to be flat. Oh my lord I think (the things one doesn't realize/but does think!?!?)
As I mentioned above I hadn't been entirely sure what she was going to use during the procedures but she did general anesthesia which as she was explaning her intended approach she was explaining our history (her and my) to the surgery Nurse who was in pre-op with us and commented to both of us: "your airway still scares me". - Not a bad thing but kind of funny as I think she was being honest but saying it in a way that it keeps her on her toes with planning for my surgeries and procedures.

 I always appreciate she is willing to do each of the heart procedures and surgeries I've been through and is AWESOME about the endocrine stress dose steroids + always seems to think about the positioning (joint/head) and trying to keep joints happy as possible with steroid/pain mngmt during/post our surgeries or procedures.
I could tell after the procedures it must have been a more difficult airway day as swallowing was fairly uncomfortable post procedure but thankfully has pretty much gone back to normal.. Nothing to horrible but not the entire best either. I just didn't eat much between that and the headaches which crept up pretty bad Weds night.
If I remember right intubation wise when she stopped by this morning (I love docs that do that, stop by either after a procedure/surgery or the next morning, it is always nice to hear their 1st hand account of how they feel airway/intubation went) - anyways if I remember right she said she started w a laryngoscope (I cant entirely remember what that means in and of itself for an airway tube but am going to look it up in a bit). and did not have success with that as she could not get a good visual of either upper or lower (I cant remember which) airway once she'd gotten the airway tube inserted a certain point. After troubles with that I believe she said she abandoned that ship (my words, lol) and used a new Peds (kids size) airway breathing tube which must have worked well and I know with LMA she wouldn't have to place it fully in airway as the LMA sits (if I remember right) at the back of the throat/mouth to keep airway open while they do the mechanical breathing and drugs, etc. I am sure I didn't get a lot of this correct but non the less overall was a lot more difficult this time then it was back in Jan and more reminiscent of other times she's done my anesthesia which gives credence to her long belief that airway in MPS, at least in my case changes over time and from day to day though I cant remember if she's said why she thought maybe these changes occur (much worse some days than others) ? Curious and for sure always interesting when she's talking about it, I don't always remember what she tells me particularly well but appreciate the info.

She told me the LMA type/style/size which I wrote down the size (2.5) but did not write anything else down (I don't know why I didn't) so will either perhaps email her to ask or get copies of the Med records to have on hand for my records anyways.

In any case will update again soon - Dr. Bragg talked to her former Partner on my behalf (I am so grateful to her remaining willing to help!) and they called to make an Appt which is set for this Monday afternoon. I admittedly am nervous but praying given Dr.Bragg talked to Dr.Iskandar maybe he will understand my MPS makes the Hydrocephalus just different? Her having talked to him + the MRI changes, CT Scan changes (done by my Cardiologist for another reason but showed fluid not absorbing properly where VPL Shunt is), the change again in glasses script), on-going headaches and of course the issues with keeping INR stable due to intermittent throwing up (for now Cardiology opting to just keep the 2x daily Lovenox injections due to literal roller coastering INR)   I hope will be enough to convince Dr.Iskandar this is an issue and he will help. Like I said I am NERVOUS! The Appt is Monday afternoon.

Will update sometime soon, early next wk.
Thanks for stopping by,


PS Ironically it is 1 yr ago today I had the Heart Cath/Heart Rhythm Study (to see if an abnormal area could be found, see if the Ivabradine would be appropriate). - 3 yrs ago tmrw was the 1st of the 2 (in 6wks) OHS. That 1st (and then 2nd ) Open Heart Surgeries where for the Aortic Valve replacement and Aortic root enlargement (Konno procedure, VSD repair/patch).

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.