Saturday, September 10, 2016

#40, Shunt revision.. relief at last..

Post op, #40
Sorry it's a few days our from surgery and I've not updated... I did get out after just 2 days as the surgery itself was pretty minimal (changing out part of the catheter that was abnormally scarred to an area) and I didn't have a lot of pain. If anything I've had far more discomfort since getting home but not actual incision pain.
For whatever reason despite the headaches being a lot better (not perfect, not as good as say when entire new shunt system is put  in but the headaches are better) - BUT side pain, HOLY SHIITTEEE, it's like it won't let up , hurts something fierce when I cough, or stand up or walk or try to sleep on that side (which stinks actually b/c my hips do not take well to being laid on all night on just 1 side. EEkk!!! I try to hold my side when I cough which helps a little but not enough.
My stomach is swollen.. It's like, seriously body, enough already... Couldn't we just enjoy a little time with something feeling some better!?!?!?! Is enough to drive the Pope crazy!
I've only ever experience it like this one other time and I absolutely pray this time is not like that time.. I may cry if it is!
I guess if it's still like this on Monday, basically unrelenting i'll call, though who exactly I'm not to sure. Seems likely shunt related but I really don't know given swollen stomach and headaches aren't bad... 

Why it matters to mean to someone... why it matters that Providers care, are willing to try (and listen) and work together..
I've thought a lot about this very thing this past week. I was pretttyyyyy nervous going in to Tues surgery, while I knew there was something wrong I didn't know what and I didn't know if it would be found easily. Thankfully it was or seemed to be but still with Dr.Bragg I knew what to expect and I just didn't this time.
Post op blood thinner mngmt was a bit of a mess. Despite Cardiology Team having sent over their specific recommendations that wasn't followed and the wrong (prior) recommendations where going to be implemented. After 2 days essentially of this I talked to Dr.Iskandar and asked if he would himself reach out to my Cardiology Team and talk to them himself + sort out a future surgery plan. He was agreeable to this and actually called them the same day + he sent me the recommendations typed up andasked for my opinion by Sat. morning.
After this he revised/edited a bit and was planning to send to the rest of my Core Providers and  run it past Cardiology Team before having it entered in my Med record. I am thankful he asked my opinion and listened when I asked him to reach out to the Team!  Seems positive initial steps...

Do I think we'll still have times we don't see eye to eye? Probably bc we're 2 distinctly different personalities with different views on my MPS and mngmt BUT if we both try and both listen to each other then I think this may work... I am cautiously hopeful....

Related but unrelated I will say I've always been curious with the manometer 'test' (what they use to test the shunt function in surgery)  if they are holding this in a vertical position wouldn't gravity cause the spinal fluid (CSF) to drain better even if say there where a partial issue further down? Especially if say that issue where at the distal (bottom) portion of a shunt?
I suppose another reason I often wonder this (not really related to this surgery but just in general curious question/thought) is the fall after I started seeing Dr.Bragg we where having 1 shunt issue after another so she (Dr.Bragg) had 1 of their Peds General Surgeons help her on a surgery of mine where she/they went directly to the distal (end) of the then LP Shunt and despite it looking like it flowed with the manometer test when they had a direct view they could see where the shunt catheter  was stuck/scarred to intestine or something in that area and likely having an affect on drainage without it being obvious.

Like I said I think we found the issue in this revision but makes ya wonder about that portion of shunts in a general way.

It's not about replacing..
As any rare disease family and especially those of us with ultra orphan (very) rare disorders know it's important our docs talk, are familiar with our whole history and they have the 'Team player' ability (vs I can figure this out on my own, I don't need to know what that Pts other Providers feel/think).
On fb someone commented on a post I wrote about getting discharged today and saying they felt the whole situation sounded more hopeful and where praying things do stay good between us, in working together.
I after thinking about this some commented back that while Dr.Iskandar is never going to be Dr.Bragg bc she just has a uniquely caring personality he and I will find our own normal if we keep working at it and each can adapt a little to the other (that sounds weird to say perhaps).
Really it's not even about replacing her (Dr.Bragg)   b/c she's still   a part of my Team and well some people (Providers in this case) just aren't meant to be replaced...

For him and I it's just finding what works for the 2 of us, to make our Provider/Patient relationship a good one where I trust him and he trusts me..  and we con't to make decisions together. Sharing with each other related to the issue at hand (for instance he gave me a few things to think about and ponder and decide if I was willing to try them and as I mentioned I asked of him a few things (such as talking to Cardiology) and I thanked him for con'ting to work with Dr.Bragg bc I know she knows my history inside out and she can help him and I as we look at possible options.

He did use a dressing over the incision which has been annoying and which I still wash my hair but thankfully quite a few of the staples seem to have fallen out, yay!  Otherwise I get the rest removed next Thurs. I LOVED that Dr.Bragg used no dressings the last yr or so after VP Shunt surgeries! =) Not the worse issue just more of an annoyance really. =)
   AZ Bound....
On a side note I am going out to AZ to a Hydro mtng in early Oct. - I have friends out there and Dr.Bragg is speaking at the mtng so though why not. All arragements are made so am kind of looking fwd to this. =)
Will update sometimes soon. Say a prayer this side pain either resolves on it's own or is something SIMPLE!!


                                       I chose this pic because I had prayed so often leading up to surgery that if it be God's will an answer could be found and atleast some relief  be given. I do think energy wise it may (I hope!!) help once we get the heart (rate) stuff under control but I so needed atleast some relief of these headaches to. Not perfect but better than it was!
                              Just have been thinking a lot this wk about 'Zebra docs' and how I am

                                           blessed to    have so many on my Team and a new 1 that I can wear in.

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