Wednesday, January 15, 2014

#29 (I think) VP and Thoracic Spine Shunt revisions.

All's I can say is OUCH (but to be expected I know) w where incisions all are- 7 total, (2 on back, 1 side, 1 abdomen/stomach, 1 neck area, 2 on head (back and frontal-side area).
Dr Bragg ended up sticking w the 2 valves I had (new ones, not re-used) and together with General Surgery assist they where able to get the Thoracic Shunt disconnected from the VP shunt at the 'Y' connector (stomach/abdomen) and re-convert this TP shunt to the Thoracic Pleural Shunt (she'd had some concerns there might be to much scar tissue from the repeat chest tubes during/post the 2 open heart surgeries in July and Sept.) I am very happy they could get the catheter back in! (yay!!).
The only downside of it all is she said due to the difficulty they have had w the ProSA valve and it being so difficult to re-program (lower/raise the drainage amount or after some types of imaging)and the Codman Rep plus others she talked to didn't have a great suggestion for something smaller profile she could try that would fit the tubing I have so she stayed w the same Codman valve I had before. She did say she'll keep an eye out or ask around to see about if other companies maybe have a smaller profile valve for the TPL Shunt we could try as she is still willing to try something else here if she could come up with something she felt had a reasonable chance of success while also not being irritating to the skin. Regarding the ProSA valve she said it being a metal disc she did also feel this might be just as uncomfortable to place in the mid-spine area given I have so little far there and would likely move when I move or sit back too.
The way the current valve is the valve is big enough to feel anytime I move, sit back or bend down but it is the best working (imperfect but still the best working) valve we've had yet out of any of the many types of valve we had used in the past 2 1/2 yrs. A bit bummed about still having the Codman valve BUT I know Dr.Bragg wouldnt have used the same valve if she didnt think it was our best bet overall. She did promise she'd keep an eye out for something smaller and similar as there are some valves she and her partner dont typically use. Hopefully for now maybe it will heal and be a little different, I can hope atleast! =)

For The VP Shunt portion of surgery, the ventricle Dr.Bragg was trying to use was just to small (smaller than a pencil width around, she said even with zooming in the Stealth assist machine she was using (this is where Monday's CT Scan was loaded in to) she really wasn't able to get a clear view of the inside of the ventricle and she did have to cut out a bit more bone in addition to what they had drilled out last year when she was also using this ventricle to get re-access. In that case, last year she had a lot of difficulty maneuvering the catheter in to place but was able to do so, just at a less than optimal angle from what I remember her telling me. She did end up revising that particular shunt location a couple times shortly after it was placed last year if I remember correctly.
Dr.Bragg decided to disconnect, take out and remove this whole set up (the same ventricle she was trying for again yesterday) + last year after multiple attempts to revise the catheter angle and once the infection was treated + moved the whole shunt back up to a frontal placement. The same basic situation this surgery, she had already re-routed some of the ventricular catheter to place the shunt back in to the parietal ventricle but she had to abandon that, remove what she'd just placed and move the valve and catheter back up in the frontal location again where it had been since last year and the area she had operated on a few wks ago when the catheter was found to be exposed.
Dr.Bragg did say she placed something either under or over the newly placed catheter (she took the old catheter and valve out and replaced w new parts to atleast minimize overall infection risk) to keep the catheter from pushing up and eroding the skin again.

Per Anesthesia who stopped by in post-op recovery (was a Anesthesiol. familiar w my history, who has had me before.) the fiberoptic intubation (which is always used whether intra-nasal or throat intubation due to in my case an excessively small airway) was used and the actual intubation effort went well w their using the scope and assist machine. Always nice to hear considering how many times I hear from either the Anesthesiologist or even Dr.Bragg that they had a lot of difficulty getting a stable airway!

Yesterday I was super uncomfortable after surgery and although I had IV pain med and the PCA it was pretty bad pain levels. Thankfully Dr.Bragg is great about adjusting meds to try and better get on top of overall pain and thus manage my post-surgical pain as that better management does often mean faster or better healing (able to move around a little more easily). I did get a little sleep overnight, on and off for an hour or so at a time but atleast with the pain being managed by a cocktail of med opions and PCA (pain) pump I wasn't waking up to aweful pain just discomfort which pushing the PCA button helped. Right now I'd say the worst of the incisions is my side (where TPL shunt distal end was inserted in to the Pleural Space) and the Thoracic valve incision which is in the old site (same incision) but the spine of course has a lot of muscles and nerves which make pain a lot worse.
I guess the 3rd worst area is head and I feel wiped out despite a little sleep so keeping awake is an interesting feat and I keep coming close to nodding off and startling myself awake every few mins. when I do nod off. Hopefully, maybe I will be able to sleep a little more easily tonight and for longer periods in between each time I wake up. Probably affecting last night some was the stress dose cortisol (100mgs) had to be given very close to bed time as it is givne 8-12 hours after surgery.

One of my Pastor's from Church was just here and we where talking about everything including the committee I am on which he helps oversee and guide. We where talking about the various things I am doing for this and one of the Ladies (who I am friends with) not really realizing how much else I have going on between my work w Gene Spotlight (right now for instance researching information regarding 4 types of Gene Therapy (which I otherwise know basicaly nothing about!) and putting this in to writing so the Foundation can make a decision regarding what studies they might like to fund-for MPS I. I know this doesn't sound like much but believe me when you know nothing about Gene Therapy it is like reading the alphabet all mixed up in a pile of soup (I don't know, hard to explain but not always the easiest reading!) :) That all said I have enjoyed learning about the various types of Gene Therapy and am learning a lot but also honestly not sure I could re-explain it in a way that would make sense in a general conversation!

Anyways in addition to that for GSF I am helping with the Committee fb page and other project planning while also trying to get a little rest (imagine such a thing!) here at the hospital. I am tired!! There isn't alot to do here anyways but am trying to not over-do to much here but also move atleast a little. I said to my Pastor I don't think this friend really gets at all what I all have going on especially when outside the hospital between ERT pretty well all day Mondays and the drive to/from, appts typically 1-2 other days a week in Madison or Milw., my work w GSF which although part time and varies in how much time I spend on it depending what they ask me to do still does take up time!
Additionally on my wks to teach teach Sun School I do spend time putting that together. I don't always feel the best so sometimes something that might take most people a short amount of time takes me alot longer. Although I am not a very exciting person I do have a life outside of the things I am involved in to! Like most people doing my own thing be it errands, going to my parents or sister's or having lunch w another friend or two is great (like most people like to do!) =) Sometimes just decompressing by reading a good book are nice, mindless really-things you do while not really having to think while doing them! =)
! I honestly don't think this friend/leader of our Committee could really get how complex the Med stuff is and thus how much time it takes as she apparently said something (not in a mean way) to Pastor about my having so much time she was glad I could do all these things she and our other member (one of my close friends) didn't have time to do!?
I said to the Pastor I don't think people realize just how much time it all takes or even most people realize that I DO work part time outside of the things I am involved in! This lady also doesn't work (was a lawyer till she moved) so I am not entirely sure what she has going on and it doesn't bother me as we all just need to focus on out own tasks and not worry about any one of us having to do more than another!
Anyways I just needed to write about this a little, kind of bothered me a little but I do know it's just a matter of she's truly pretty unaware of the overall medical issues and thus time it all takes. Can't blame someone to much for that I guess as Connie and Joan have a little bit better of an idea as they've picked me up from numerous hospital in-patient stays as well as Joan bringing me this week to be re-admitted for another surgery.

I don't think you can every truly get how much time medical stuff takes unless you are doing it yourself as someone talking about it is completely different than being in the situation over and over again yourself.

I think I got the basics of the surgery and today they re-started the blood thinning though (and I'm not sure why this route) they re-started it with Lovenox injections vs going starting to the Coumadin 24 hrs after surgery. The injection actually wasn't as uncomfortable as I thought it would be based off what others have said to me-I guess not much injection wise can compare to the SoluCortef (stress dose) injection I have to do from time to time in my upper thigh-that goes directly in to the muscle!

Thanks for stopping by,
I'll update again when there is something worth writing about or any changes,
Take care,

Not the best pic but from this stay - there is one other incision at the back of my head also covered by Telfa and then the 5 others ranging from shoulder/clavicle on down. A lot in other words! Per Dr.Bragg "I think we may have even broke our previous record in # of incisions in one surgery with you, this time." LOL, probably so!

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