Monday, June 20, 2016

Cardiology / Neurosurgery, VPL Shunt fluid issue? ... Grateful for Providers helping!

**Updating this (read the rest so this makes sense) but Dr.Bragg messaged a bit earlier to ask if I'd be willing to see the former Resident now Attending that's been in on a few of my surgeries w her.
He's on the Adult side but Dr.Iskandar, her former Partner is out of the clinic till July and seems they (my Team) think this needs to be squared away sooner.
I am more than ok w Dr.Lake, if he's willing to see me, to take on my case for now as long as he'll work with the  Peds NPs and Secretary
if we do have to do any surgery. Given they (Peds Team) know all the things we have to do/arrange for Anesthesia (difficult airway, cardiac aspects to), Endocrine (pre/post steroid dosing for cortisol) and Cardiology  re  the Coumadin/surgery INR mngmt pre/post and ERT ordering for any surgery if we did/do have to do something. I assume Dr.Lake would and know Dr.Bragg would fill him in.
Ultimately I still think I'd go w the new Peds Nrsgn that is coming later in summer/Fall (but my opinion could change, who knows!?)  but for now if Dr.Lake where  willing to see me I wouldn't complain given he has been in on a few of my surgeries  w Dr.Bragg and have yet to hear anything bad about him. 
I don't remember him well but I've yet to talk to anyone be it Dr.Bragg, Nurses, other Families, etc.,  who didn't have good things to say about him. And to I'd likely have remembered if I didn't like him (I know that sounds terrible). 
If I am remembering right he was 1 of the  good Residents when he worked w Dr.Bragg on my case..
I think she is working this out as she has time but had asked me that question via message earlier. I know also she suggested I call her Secretary  (former Secretary ) tmrw which I left a msg for her (Anna) this afternoon as she's not there today. Dr.Bragg also said she'd already sent a note to this Dr.Lake to give him a has up. So we'll  see? As Dr.Bragg said can't hurt to talk to him and see!?! =)
- I suppose I could have said it earlier  but am updating this post as I sit at ERT after a somewhat miserable morning so I think really I kind of hope this is at least a partial answer to symptoms I've  had? 
A case of what to wish for? Not really wanting surgery (really don't want surgery) but do want to feel better?.. As my Cardiologist Nurse said to me when she called w INR results "it's crazy how crazy this all is" (or something like that,  she simply meant how many steps and complicated it all always is which is due to my complicated issues).

1st part of update, Sunday ----- 
It has been a somewhat busy few wks, a few small things I am working on for the Foundation I work part time for, teaching VBS (Vacation Bible School) last wk (exhausting but the kids are fun. The smart board I  used in my class rm definetly out smarted me the 1st few days but my Teacher aid and I managed and the kids rolled with it. Overall I really enjoyed it and makes not having SS and seeing my kids from there bridge the summer a bit. =)

 Tues  last wk another person taught for me as I had ERT (Infusion), a CT Scan and Labs at CHW and FMLH.
VBS just ran through Thurs, with the kids singing in the Thurs (mid wk) Church service with Koine a Christian worship band that has been coming to St.John's the past 3 or 4yrs (perhaps longer this is just the number of yrs I've taught VBS).
A few of my kids are in my 3rd/4th Sunday School class through the school year, others will be in my  class 1st this coming school year and still others are kids that don't do SS but come to VBS. It really is a fun time though. Exhausting but fun with all their energy - kids are fun to be with. =) And names, oh am I terrible at names! But there to that's the awesome thing with kids they just roll with it and by the end of the wk I was getting a little better and I  kept a notebk with me with my kids names written in.
My memory is terrible at that sort of thing (and I only even had 12-13 kids this yr, some yrs I've had as many as 21-35 kids if I remember right on separate yrs!

MPS/Issues wise there's both some things going on and not much going on given other than Tues I rescheduled most other things I had scheduled last wk (not having looked closely at my calendar at the time) to other weeks. I did have to go and re-do INR on Fri  (was finally in range at the crazy dose of 16mgs!) but otherwise other than the usual assortment of phone calls, emails and messages last wk was  a little quieter than most weeks (medical wise anyways!) and kind of nice!

Ironically I had my phone on vibrate each day at VBS (but did keep it with me as I use the camera to take pics of my kids in the various activities and in turn  made copies of a couple pics to give each kiddo) but this means I hadn't checked any messages or emails till late afternoon each day after VBS.
Monday my Cardiologists Secretary called re the CT Scan they wanted, apparently the hospital insurance people couldn't get it approved so Dr.Earing (Cardiologist) must have told his Secretary (per what she told me) "Call Erica she'll know what to do and will get it approved". LOL, that for real made me laugh (standing in the grocery store no less that day) but =) indeed after I checked out and got out to my car I called my Insurance Case Manager and confirmed the scan was part of my Cardiology 'out of network' prior auth exception and would be approved. Not 15mins later I called the Secretary back (she'd asked I let her know)  to let her know what they needed to do and that it was in fact covered.

Dr.Earing himself called last wk (shortly after I left VBS last wk)  re the CT Scan results and some concern he had with that. I can't remember for sure but apparently there is some loculated fluid (something to do with abnormal pockets of fluid in specific areas I think)  around the VPL shunt which is  the shunt that drains to pleural (lung) space.
This part I can't remember for sure. He is concerned  is that abnormal fluid pockets affecting the shunt or indicative of shunt issues/why I'm having the problems I am.  (I admittedly had wondered if it wasn't just normal CSF fluid build up but after he and Dr.Bragg where able to communicate (I am writing this now some days later), she let me know Dr.Earing's concern was/is the fluid area is larger than it has been I guess and both seem concerned (from what Dr.Bragg told me) that either the tip of the VPL Shunt may need to be moved or the CSF isn't absorbing like it should be which she said can happen when shunts drain to the pleural space.
I believe we had a problem with 1 of my prior VPL Shunts and fluid building up in the lung space almost 2 yrs ago or so though at that time it caused other symptoms. In that case we only caught it from another surgery if I remember right and ended up revising the shunt catheter tip placement then to.
Peds General Surgery usually helps/helped Dr.Bragg with these revisions due to the copious scar tissue I have from the prior Open heart surgeries and my MPS in general then causes a lot of scarring to from the storage (the enzyme replacement by IV I get every wk doesn't get in to many areas such as this chest wall) so hopefully if we did have to do something her former Partner would also use 1 of the same Peds General Surgeons given they are familiar.
I admittedly would have guessed if a shunt issue (which I have been sure there was/is an issue) that it was the LP Shunt given nerve irritation, low back discomfort/muscle seeming irritation in low/mid back and other related issues but it's possible if the LP Shunt is having to pick up more that could cause the same secondary symptoms due to irritation. I realllyyyy do not want to have to do surgery yet I want to feel better so I admittedly don't know what to wish for with this all!?!?

In any case when Dr.Bragg messaged me she noted she was emailing her former partner and giving him a heads up so I just wait to see what he thinks. I also have to re-do INR tmrw so when I call the ACHD (Cardiology) Nurses will see what Dr.Earing has to say if anything specific. I completely trust Dr.Bragg and him working together on this and trust between the two of them they'll sort out a plan.

I said to Dr.Bragg how it does admittedly make me nervous if I end up having to have surgery I wish more than I can even say she was still here but since it would be with  her former Partner I know I just need to gear up and try to realize he's got a quicky personality and do my best to educate him on how my MPS does make presentation and overall situation different/more complex/less straightfwd.
I am glad Dr.Bragg even if she's not here and she's not my Surgeon anymore ( =/ ) will do her best to smooth things as much as possible. I said to her I think she's AMAZING for still wanting to/being willing to help!  I am exceptionally grateful to her!!
 She in her usual Dr.Bragg way, bc I think/know she knows how uncertain it all makes me (and this coming from me who doesn't worry much about most of my medical stuff b/c I plan, organize and prepare the best I can so thus I don't have to worry much) reassured me  if we do have to so any surgery it would be ok and she'd be in the background (in a sense)  to help with little things if needed.

  I know I need to put aside my uncertainties and my uncertainty how to interpret her former Partners personality but I won't lie it's hard! I have an extraordinarily hard time figuring out when people are being real, sarcastic, funny or what - I can't always even tell with my own friends or family much less someone I really don't know!
 I KNOW without a doubt he's a good Surgeon, there's no doubt about that it's just I worry bc he's said as much to me he knows next to nothing about my MPS and it worries me bc that DOES complicate my Hydrocephalus. Ahh heck I know I need to stop worrying and put it in God's hands but so much easier said than done!!!
 I am not even generally the type of person that worries about much (lol in some cases not enough I'm sure, though this doesn't mean I don't plan and get things in place where necessary. I think that's the very reason I don't worry a lot. But again this is a 1 day at a time thing and I know if we do have to do surgery then i'll work with Dr.Bragg and with the Peds Neurosurgery Team at UW to figure it all out.  God has a plan, right?

In any case i'll update again when I know anything new or updates from any of the above things.
Thanks for stopping by,


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