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. =)

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