Saturday, October 22, 2016

4 wks in-pt, 3 more surgeries - so glad to be on this side!

Sorry for no update in well over a month, it has definitely been a VERY long month + and so little of it I remember. Needless since the last update and that surgery which ironically I believe was #40 I ended up back at UWHC for another 4wks with a with a shunt infection and 3 more subsequent surgeries. This = 43 surgeries I guess now for shunts with the shunts 1st having been placed in 06' There where apparently numerous procedures done though I remember very little so i'll just share what I do.

I was admitted from clinic and though I remember very little of this the Aide told me when I was back in clinic for post op f/up's the other day that she took me from clinic over to the hospital and would ask the Neurosurgery NPs over the wks I was in-pt how I was doing and if I was still in-pt. I thought that was sweet actually as I don't really know this MA all that well. I do like her though.
With the 1st surgery of this series which was to externalize the shunts if I remember right I had an Anesthesia dr who thankfully followed what was used in the past and may even have been someone I'd had before but admittedly I don't remember a lot from that 4wks. That is a bit unnerving and almost humorous the things I do remember!

The 2nd surgery if I remember right and believe me it's all a bit of a blur after the 2nd or 3rd wk but that was to re-replace the External drains as there where apparently 2 blood clots in my brain causing the External Ventricular drain to not be working right. I've to admit I totally do not remember this surgery but think this may be the point when the Brain flush was done or perhaps it was the flush for the External Drains to clear the blood clots that occurred in my brain but that seems to be atleast partially what has knocked me for such a loop after the 2nd or 3rd surgery!
Due to complications with the blood thinners and all these surgeries there where relatively long periods I was kept off the injection blood thinner. I admittedly am not sure why that couldn't have just been reversed when needed but thankfully we seem to have avoided any clots besides the 2 that seemed to have been in my EVDs. I am still a bit confused on that part based from what Dr.Iskandar was talking about at the Appt but will get the clinic and surgery notes in due time (whenever I get around to it) so I can share these with my other pertinent Providers as well.

Apparently with the last (3rd) surgery bc the infection had been resistant to the various antibiotics (there where 2 infections but the 1st cleared within 1.5 wks of the shunts being externalized if I remember right).  The 2nd infection is the 1 that took longer to clear and more likely to recur so not only was IV Vancomycin given for that (and another antibiotic for the 1st infection, the Vanco was given under a way to prep my body from prior severe reaction and then given continuous 24hr infusion and the Vanco/Antibiotic continuous infusion ended yesterday  (Fri) this wk. Something like 5 or 6wks total on it? Yay to it finishing though! Having been able to hep lock and de-access myself Fri was like a Hallelujah moment of this all! I have left over supplies all bagged and boxed up to give to send back!

In addition to those IV antibiotics a "brain flush" was done which I can't remember if that was antibiotics or if that was some kind of other irrigant (saline?) to basically (I think but here again I don't completely remember) irritate the brain and better rid of the infection.
NOT AWESOME! That was/AWEFUL and my brain literally is still recovering from this.  Seems  getting a bit better each day and head clearer a little quicker each day but vision seriously driving me crazy in the mornings the past few wks!
 I even sleep mostly upright and yet my head (or vision really, mostly) is like on crack! Irritated so I am glad that is finally seeming to resolve and in actuality seems related to the Lumbar (low back) shunt swelling? Weird but is true.

For the last surgery which was about 1.5wks ago now the VPL Shunt was able to be placed back in the pleural space (there was some concern by the Peds General Surgeon this might not be possible due to scar tissue per Dr.Iskandar) but again per Dr.Iskandar they didn't seem to run in to to much of this (I believe this area was cleaned out by this same Peds General Surgeon that Dr.Iskandar used when Dr.Bragg put the VPL Shunt back in about a yr ago).
 The VPL Shunt again drains to pleural space though ironically this is the area that my Cardiology Team 1st suspected there was an issue when on CT Scan they saw the loculated fluid collections.  Dr.Bragg had asked Dr.Iskandar to look at this area a few months ago but he in a sense missed the issue BUT on his part I will say when in-pt unexpectedly this last time he came by and apologized and talked about how it was missed + what could have been done had he caught it earlier and what the tentative plan was now.

 I appreciated he was honest and we're all human so is what it was.

The proximal (tip, part that goes in brain) starts at the back of my head of the VPL Shunt and now runs down my back where it is tunneled further down in to my pleural (lung) space to drain. This setting is set at the bottom, lowest setting (30, drains the most).

 I admittedly hate the new VPL Shunt location as it makes laying on that part difficult/uncomfortable and seems to cause swelling when I do but maybe, hopefully with time this will go away/stop?! I am hoping as I  just want to be done with shunt stuff for awhile!

The LP Shunt placement which was done in the same surgery was also not the best, we've had to do this multiple times before with Dr.Bragg due to my anatomy/scar tissue and my underlying MPS but a laminectomy (basically removal of bone from the spine I guess is easiest way to describe it) had to be done in order to get the LP Shunt in place. This to, OUCH!
The swelling this causes, irritation and the LP Shunt valve seems to sit right in this same area of my low back vs where it used to be on my side which has seemed to very much add to the irritation and discomfort.
 I really wonder if the swelling that's going on is affecting the overall LP Shunt function or by that  I mean some of the odd symptoms as headaches themselves are fairly ok. It's the secondary symptoms..

The irritation this causes holy shiiiittteeeee!!!! Literally I can be pretty forgetful/disorganized and other things as it is but I have found ways to deal with this and use various means so for the most part I function and remain organized.. This? This holy smokes has sucked! Thankfully seeming to get better a little at a time but damn!

I have to say and I guess I am not that surprised but I AM GRATEFUL during all this infection and long 4wks in-pt, repeated surgeries, issues, etc my former Peds Neurosurgeon (Dr.Bragg) stayed in touch, talked to my now Neurosurgeon (Dr.Iskandar) repeatedly and she kept up to date on what was going on + was a support to me which means/meant a lot.
 I am beyond grateful to Dr.Bragg and her support, feedback/answering my questions has meant a lot as she really knows my history + honestly she cares. Definitely meant and means a lot given she really wouldn't have to stay part of my Team!

I followed up with Peds Neurosurgery the other day and Cardiology Nurse is working to change the. 6mo appt and Echo that was originally scheduled this past Tues (earlier this wk).
 I also talked to my Heart Rhythm dr (same ofc as Cardiology) and he was ok with our post poning the Heart Rhythm Study and Ablation (the re-do) till later in Dec. I need a break from medical procedures or surgeries so am grateful for this!

The post surgeries/procedures/infection in-pt stay f/up Neurosurgery Appt went ok. 
Stitches where removed from my back incision (the NP said there where about 20 stitches  + the stitches where removed from the EVD and former VP Shunt locations.
The rest of incisions are either disolveable sutures or other forms of closure and honestly I haven't even counted how many incisions there are but atleast 6 from 2 on my head, several on my back and abdomen and where the valve from the LP Shunt formerly on my side.
That is probably what I miss the most is the LP Shunt valve being in  a less irritable area! Crazy but I guess never surprises me after infections and what ones body can put up with! I am just glad to be 1.5-2ish wks out from surgery now!

I'm very sure there is stuff I've not remembered to write in this post from the last 4+ wks but atleast I am on this side of the shunt infections, done with the many wks of IV antibiotics and hopefully keep healing so I can get back to a more normal for me!
Thanks for stopping by,


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.