Wednesday, June 29, 2016

ASAP - (The Past Few Months), Today's Neurosurgery Appt.

Today's Appt with the new (but not entirely new to me) Neurosurgeon went ok. Other than my having a tad of an issue finding the clinic (4 different people, but the 1st 3 gave 3 different directions)
and then another issue finding my car (the whole hospital/clinic/parking set up was weird and to boot having never been there (an off site UW Campus/clinic) I never thought to write down any info where I parked my care (which on a day I wasn't so tired/headache still inproving I'd have most definitely done that) - something a Provider once taught me (lol after she walked around a parking garage at UofMn helping me find my car)! ;) ) Non-the-less I finally made it and to eventually found my car.
The brain MRI and shunts being reset this morning  (by the Peds Neurosurgery Team at UW Children's) prior to the Appt with Dr.Lake also went fine.
I admittedly am a little unsettled on who will be managing the shunt stuff longterm. The Peds Nurses have several times made comments along the line 1. either the new Peds Nrsgn interest isn't Hydrocephalus (lol neither is it the Adult Nrsgn I am working with right now, he just happens to have been somewhat familiar with my case from training some under Dr.Bragg and being in on a few of my surgeries and we needed some one to help right now). The 1 Peds Nurse made the comment that they don't even know if this coming Peds Nrsgn will treat/follow any Adult Pts.
The flip side to that is Dr.Lake (and he really does seem nice) commented today when getting more up to date on what's going on and my history as a whole made a comment along the lines (my paraphrasing, if that's the right word) - 'Dr.Bragg asked me to  help now b/c the Peds Neurosurgery team is out of town' as if he thinks i'll go back to the Peds Neurosurgeons.
I actually don't know  what will happen anymore entirely! I  messaged Dr.Bragg an update and this  saying basically she knows me enough, lol most people worry about the health stuff, I instead worry about the stuff that in reality I can't change no matter and has to just play out. Pointless worry on my part or as I often say to a few friends 'wasted energy' worry!
Non-the-less I didn't realize UW can't access the CHW images via either the 'Care Everywhere' system or via their 'PACS' system so the images had to be mailed to Dr.Lake's ofc and wont arrive likely till Tues next wk.
I admittedly didn't think to ask what his opinion was of the May MRI or if there where any new changes (even less likely given my ventricles rarely change/increase as it is) but he at the end of the Appt said to me (I wrote this down, knowing I'd need some sort of (perhaps) reassurance he might he might have an idea/actually help once he is able to look at the Chest CT results) but he commented something like 'once I get the results we'll go from there and i'll let you know what the plan is'. - I am trying to not get my hopes up he'll be able to help but at the same time I'd be lying if I said I don't have atleast a small piece of me that is hopeful he'll have something/be willing to do something? It's not even that I want to do something it's that I want to feel some better!
Given the MRI changes, the seeming lung/chest changes (fluid collections) and overall symptoms it sure  seems like there's something shunt going on, especially given my symptoms have just cont'd to slowly get worse and even people around me now are seeing (the seeming) signs in the odd ways I show them (overly tired, memory, etc).
I am praying!  
I'll update here once I know anything from Dr.Lake or his office re what his official thoughts or if he has any ideas. Hopefully early next wk.
Below is something I have been thinking about, related to VBS a few wks ago for a few days and wrote it out here. -
I may have shared this in a post  a time or 2 ago, how our VBS "theme' this yr (several wks ago) was ASAP (Always Say A Prayer'.
You may ask/think 'well that's cool but so what?' - The reason this came to mind is the kids in my class and I talked alot that wk about God's 3 (possible) answers to our Prayers (Yes, No, Maybe).  - I rarely talk about my medical stuff to people unless they ask (I share quite a bit on fb and my blog bc I know that reaches Families and Individuals in the same or similar shoes as I)  and I get alot of personal messages from people who've found my blog when they've been looking for info. But otherwise I rarely talk about it  to people or my class kids.
I don't talk about my stuff alot w my SS kids unless they ask or in the case of my VBS kids I without specifics mentioned to them as an example  how there where often times I prayed (especially) in the past 6mo and how I did struggle at times bc I didn't know what exactly I should want in response bc I knew my real prayers weren't possible.
I asked them for examples what they might have prayed for recently and been uncertain of the answer or did they have examples where they knew exactly what the answer was (was a great discussion!)
Anyways as a wrap up to the 'Yes, No, Maybe' I talked about in my own life how some of my prayers where/are being answered now but in God's own way, later vs an immediate answer(s) at the time I'd prayed/been praying.
I talked about with my kids and they talked about in return how as I was  I praying/re-praying at times and honestly talking w God some days, many days in a row about my fears (on repeat) the answers he gave where of often  in his own time vs my time. -
The reason I share all that is bc I feel like leading up to  this Neurosurgery Appt maybe God is showing me (has been showing me really), as hard as some losses to my Team have been I also realize how  blessed I am that for instance  I am able to stay in touch w Dr.Bragg/she has helping my Team and God is allowing her to still in my life. I can't even say how much easier having her help has made this all and having her help in helping my Team has made some issues easier to sort/figure out a plan.
Same w/my former Pastor and that knowing when it comes for SS planning to start this fall us Teachers will  be able to Reach out to him. Knowing that and knowing the Pastor we do have is so tech savvy is comforting. I very much like to do things on my own BUT I also very much like knowing there are people there I can reach out to if needed!
  Just knowing  we might be closer  to figuring out seeming shunt issues ( I am sure praying!)  and to  we've a plan for the Heart stuff feels much better than a month ago where it wasn't anxiety by any means but there was a fair amount of uncertainty.
Really the whole reason behind sharing about 'ASAP' was simply that no matter in good times or hard times or bad times  when it feels really,  really hard God IS with us! 
I can't even say how many times I've thought 'ASAP' in my mind and have kept the plastic bracelet us Teachers each wore that wk sitting in my bathrm as a daily reminder. =)

Thursday, June 23, 2016

Appt w Neurosurgeon set, thankful for Team helping!

An Appt with the new Neurosurgeon, (Dr.Bragg's former Resident, the 1 who had during his training  been in on a few of my shunt surgeries w Dr.Bragg) is next Weds. -
I want to say he was in on 3 of my surgeries w her during his training and graduated (residency/training) last summer  but not entirely sure about that last part.
His interest apparently isn't Hydrocephalus  (lol different people, 1 a Nrsgn and 2 Nurses have pointed this out) but is apparently following some of Dr.Bragg's former Pts and was willing to see me. So we'll  see, I am open to trying.

When I looked back at the notes I have a while back I believe 3 is the # of times I saw his name listed as Resident under but not absolutely certain.
Anyways his ofc called today to schedule the Appt for next Weds, as an "add on" for his schedule  which is also when Dr.Bragg's former Secretary told me she expected the Appt was going to be.
Anna (Peds Neurosurgery) Secretary is ironing out the MRI scan  (timing, she changed it to the same morning. The Prds Neurosurgery NP or Nurses are set to re-program the shunts right after the scan which I'll  go up to their clinic (same site).  

They  are repeating the scan before for the Appt (ventricle size had changed a small amount on imaging done a month ago, right before Dr.Bragg left) and then re-program and go over to the Appt. which is off site.
I had forgotten about it initially and when this Neurosurgeons Secretary/scheduler called today she had no idea (lol) how to go about scheduling for the shunts to be reprogrammed so Dr.Bragg advised talking to Anna and having her help to make sure it gets done right after. Thankfully Anna (who is a godsend) had it sorted out when she called me back this morning.
I actually can't remember if the Adult side even has a reprogrammed but Prds is doing it after this scan. It Amy be Prds always does the reprogramming?  I honestly can't remember but want to say they'd have to go get the scanner from Peds side whenever my valves where being re-programmed on Adult Neurosurgery floor (was never a huge issue on my part, the 2 hospitals are connected a via skywalk).
Either way not a huge deal but something we need to sort prior to the scan.

Otherwise this Nrsgn (Wendell Lake, MD) has access to the CT Scan imaging done at CHW (by my Cardiology Team, they where originally looking at something else in chest/lungs) and Anna/Dr.Bragg seem to think if I remember right they'll  have to tap 1 of the shunts to test CSF for infection  (I believe  fluid done  about a month ago was negative so that's a good sign).

Otherwise I can't say enough how much I appreciate Dr.Bragg talking to this Dr.Lake on my behalf! This despite her being in AZ now and her talking to my Cardiologist to about his concern /what they felt might be needed. She's  AMAZING!!!

On an unrelated and not all that important  (but so weird!) note I was thinking about my schedule the other morning, trying to fall back asleep and thinking about the past 3yrs especially. 3yrs ago I had the 1st Open Heart surgery on July 23, then last year 2 yrs after that 1st OHS almost to the day (20th) I had the Heart Cath/Heart Rhythm Study to look more closely at mitral valve, heart function and heart/lung levels + they where seeing then if there was a particular rhythm they may be able to ablate. For that we used the same Crdoac Anesthesia Dr as all prior cardiac surgery/procedure.
Fast fwd a yr, I've since started the Ivabradine  (last summer)  for heart function and rhythm and had the Mitral valve replacement (Jan) which went a lot better than my Team thought it might.
Fast fwd again  to this coming July, we've cont'd to have issues w to fast of heart rate and problems that's affecting the heart muscle/function and somewhat subtly to the new valve so a heart rhythm study and ablation (to try and 'kill' (ablate) the abnormally fast rate, slow down heart and in turn help heart function).
That date? July 21st. I hadn't realized/thought about this when we scheduled it (was scheduling a bit out so I could use the same Anesthesia dr. as the other times) but bizarrely weird!  I remember joking with the Anesthesia Dr last yr about being under her care almost exactly a yr after the 1st OHS (we'd then had the 2nd OHS in Sept that yr)!
I'm not sure of the almost 40 shunt revisions I've had, all but 3 w Dr.Bragg we ever had surgery dates multiple yrs in a row so close together  (other than Christmas 2 yrs in a row). But then again maybe since there where many I just don't remember!?!

One of those oddly weird things!

In any case will update after next wk.
A little nervous  (grateful this Nrsgn comes so highly recommended and Dr.Bragg"s helping from afar) but tad nervous no less.
Thanks for coming by,


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,


Wednesday, June 1, 2016

Heart (Ablation) Study scheduled. Working together re shunts

The Heart Rhythm Study (Ablation ) and Heart Cath are scheduled for July 20th, 1st case.
We do have the same Cardiac Anesthesia dr., the 2nd EP Dr and my Heart Rhythm dr. with arguably the Anesthesia part being most important and Heart Rhythm dr being familiar with my issues now so should be ok.
I hadnt thought of this to ask last wk (emailed earlier this wk) but it is scheduled now as just an over night stay - as long as all goes well. As a friend said "a sleep over", lol.
These (direct) tests and procedure are being done to directly measure pressures in heart and between heart and lungs as well as to visualize  the  mechanical valves.
Most importantly the goal is to try to ablate (rid) the abnormal signal (overly fast) heart rate coming from the sinus node and thus slow heart rate down.
As I think I mentioned in earlier blog posts re  this the risks can include the ablation causing a to slow heart rate and thus need for a Pacemaker but there to honestly I feel like I did far better with all 3 Open Heart surgeries then was expected so yes I know the risks  but I also am looking at it as 1. We may have no problems or 2. It may or may not even help heart rate slow down enough (to get off some meds) or honestly 3. If it did cause to slow of heart rate well then we deal with that and manage.
I can't worry about every thing that 'could' happen when we may in fact make things a lot better...
 I also see Cardiology (not prior planned, they want an Echo done now and Chest Xray) later this coming wk due to symptoms that I to be perfectly honest figured where related to the head/humidity but my Cardiologist at the Appt the wk before wanted me to let them know if it did not improve and/or changed symptoms wise and the NP  and Dr.E this wk felt they should look at more closely just to be sure. Why not, what's another appt? Sigh, never ends. <--- It is what it is, good that they are cautious I guess but boring wouldn't be a bad thing... 
I saw my Primary Dr  earlier in the wk just for overall given all things going on which we talked about the shunt stuff/Dr.Bragg having left and the interim period amongst a few other things.
She knew what the mngmt plan was but was happy to know what Dr.Bragg had helped put in place for managing the headaches now (work w Peds Neurosurgery NPs) and Dr.Simpson (PCP) and I  came up with a few other possible ideas we're  looking in to.
Given things are up in the air between the plan we did have in place we're looking at other options at the time being so we'll see?
Her seeming concern was/is the   changes in the last quick brain MRI done (done a few wks ago, last time I saw Dr.Bragg) in fact shunt related (what else would it be?
That MRI report  noted change in ventricle size from prior imaging which I knew from Dr.Bragg
A new MRI is being done in a few wks, my concern is ventricles rarely enlarge as it is so seems unlikely they'll enlarge even more but there's definitely something going on given symptoms keep changing.
 My PCP wondered if given symptoms if that ventricle size change especially given my ventricles almost neve change size (rare occasion ) if that wasn't pointing to a shunt issue.
I talked to Dr.Bragg re this and my PCP wondered if a Neurology consult to could  perhaps help in this interim few mo's (till new Nrsgn comes Aug./ Sept.).
We'll work to figure this out, I  talked to the Peds Neurosurgery Secretary and NPs and have a few names but even with their talking to that Team the quickest would be Sept. so doesn't do us a lot of good.
 Dr.Bragg has said when the new Neurosurgeon comes later in summer she'll talk to him about my case so hopefully that can help  and most of all just keep praying when the new Peds Nrsgn comes in late summer he is open to looking more closely in some way at the shunts.
I truly think and have thought it's the LP Shunt given symptoms there replicate symptoms we've had in the past when we weren't sure it was in fact a shunt issue but then would have to do something directly with the shunts and indeed would find 1 of the shunts, usually the spine one wasn't working well.
Lastly the NP today had written up all the  surgeries Dr.Bragg has done over the past 5yrs - 36 to be exact  with my having 3 shunt surgeries prior to Dr.Bragg (so 39 total). 
Definitely grateful to Sue for putting that together!

Coumadin (blood thinner) wise my Cardiologist brought up last wk, almost as a passing remark/question did I think I was resistance to Coumadin (I don't)  and we also talked about (both of my Cardiac drs - Cardiology and Heart Rhythm dr.) brought up the heart rate control and it's resistance to cardiac meds. This is the reason we're going ahead w the procedure (ablation) though my Heart Rhythm  dr did say he would stop the Ivabradine for  a short while after the study to see how HR has reacted. If it helps but not enough may still have to use Ivabradine after but  will depend. This particular study is one that can either not work effectively enough or cause to slow of heart rate (thus need for pacemaker) or work very well and do exactly as we hope.
The Heart Rhythm test was coord. between Dr.Kovach (my Heart Rhythm dr), Dr.Dhala (1 of the other HR docs) and  with the Cardiac Anesthesia dr. we've used for all 3 open heart surgeries (valve replacements) and the 2 prior Heart procedures/tests. That past especially (having an anesthesia dr familiar w airway issues) make me not worry much about any of it.

God knows his plan, right?
Thanks for stopping by,