Monday, January 26, 2015

Frustratingly grateful, grateful for Providers who don't give up

I saw Dr.Bragg today for the VP Shunt revision f/up, not surprisingly the incision con'ts to heal well and my hair is growing in, thankfully as the area they shaved is not in the greatest of locations this time. I always think, even if it is vain how much it must stink for people who have really thin hair to have shunts? Although I as always wished we could have figured something out today I know I can call her Secretary or Nurse anytime if things got worse and I am grateful even if the overall situation is frustrating that she stays on my care, not giving up and willing to see me if I think somethings going on or changed. I think the words I used in an update on fb today in talking about the appt where being grateful she is 'steadfast and caring' as she really wouldn't have to be.

I really didn't know what to wish for with this appt., sitting in Church yesterday I prayed silently to myself for God to guide us and for his wisdom to shine down. While with my Sunday School kids yesterday they are so inquisitive and yet so sweet asking if I was back and was I feeling better and that they missed me the week before and several said they'd been praying for me (so sweet). I think I hoped maybe we'd figure something out at this appt but also I have to admit I wasn't so sure the shunt tap was going to show a problem, atleast not yet. (I know thats a funny thing to say, an odd thing to say).
With doing the shunt tap a needle is inserted within the reservoir in the VP Shunt, the part that goes in to the ventricle in my brain where CSF is and with this Dr.Bragg can test how well the shunt is flowing/functioning and also is able to draw off some fluid to see how this would do.
It's one of those things where usually I can hear her drawing off CSF (sort of a mild gurgly or suctioning sound) but couldnt this time, perhaps bc the flow was good and so it took a bit after sitting up to feel the difference but WOW, is it ever soooo, sooo nice that difference when even a very small amount of CSF is removed! I felt a whee bit like I was on high energy this afternoon, running in and out of Target (I only had a short window between Appts) grabbing a few things before going to a Hand Appt (see below but good!), the store and driving home in awesome weather (sarcasm). It was/is nice to feel nice for that short while, to remember 'hey this is what humans feel like'! ;) Perhaps a boost that I needed given this past week has been mildly depressing, not trying to think about it to much but yet knowing I atleast felt reasonably better not that long prior!

My head just feels soo clear - my guess is by tonight it will be back to it's 'more normal' but seriously i'll take the relief I can get when I can get it! For whatever reason this removing a small amount of CSF and getting relief is a semi-common phenomena w MPS pts (maybe most Hydro pts., not sure) and then typically symptoms will return within a few hours to 1/2 a day.
I didn't want the shunt tap when she did it to show an occlusion (would be partial, whenever there is a full on shunt malfunction I know within hours and end up at the ER) vs partial occlusion the TPL Shunt is there to pick up a bit of the slack but on it's own can't do enough to handle pressure needs, which I have to admit i'm not sure I ever put those 2 pieces together before but totally makes sense after this last malfunction 2 wks ago and a few other experiences w complete shunt failure Dr.Bragg brought up today that we've had over the past couple yrs.
Obviously it's good the VP Shunt is working but dang it is soo frustrating knowing basically it is just a matter of time till it will occlude or stop working (more likely partially occlude) and wishing the 2 shunts would work better together to do a better job of getting fluid off consistently, more like when there are EVDs in place!
Even the D6-4 floor Pharmacist last time I was in-pt when talking to me about if she should go ahead and order the Enzyme Replacement or not, not knowing if I'd still be there that Monday finally made the comment "well we can always use it next time your back if not this time". LOL, probably not funny (actually it isn't) but yet it kind of is b/c it seems non of us have faith the shunts will just work for good and instead is always a matter of 'how long do we get this time'?
I didn't think of it till now but this just made me wonder if they (Dr.Bragg and her partner) have decided on who they'll hire as a 3rd Nrsgn on their Team.. Doesn't really matter but is curious.

I don't really know why I was thinking of this earlier but there in reality probably is not alot of reasons Dr.Bragg should have to believe me (I don't know?), I know I don't always have classic presentation while other times I do but thankfully she does seem to and she cares which means as much. I think sometimes maybe I am just amazed she hasn't given up and she doesn't seem like she gets frustrated at me that issues recur.. I know it's not my fault but what Surgeon would really want to have to keeep on keeping on revising someone's issue? Non-the-less believe me I am beyond grateful! My faith may waiver (that she'll not give up) but I trust her and am so glad to have her in my corner.
Her NP brought in the kit to do the shunt tap this morning and commented to the Med Student (a former Nurse, very cool, it would be really curious to know in a few yrs if that Student liked Nursing or being a dr better!) that Dr.Bragg is really unusual in that she likes to get her own supplies and prefers to do her own tests whereas many drs ask the NPs or other Staff (apparently, which I dont doubt) to do it for them. Just another reason to like her (Dr.Bragg) for her being so human, so down to earth. I am glad she is the the way she is though, she talks about her everyday life and she is funny + knows how to put things in human terms which helps put me at ease sometimes when I probably feel a little stresseed out. I have a great team of Providers overall but the very best ones are those ones who care, who can explain things in ways that I can understand (even if I understand most of the medical lingo sometimes their using funny ways to explain something makes it easier to remember!) and who go out of their way to try to help even when I feel like a nuissance.
The Hand Appt was good, I saw the PA which he was happy with the range of motion I have going on despite 2wks in the other splint and a few days in this newer removable one. The bruising is still pretty remarkable he thought (I guess it's more than with other hand surgeries i've had, lasting longer) but non-the-less it is cont'ing to go down and the swelling he thought should decrease in time. As far as the splint I can con't to take it off some at home but wear it anytime I am not home and f/up in a month with the Hand Surgeon. I can probably live with that. =)
Otherwise I just have to make the quick comment and i've written about this here before that I feel like when I am dealing with pressure issues I don't always feel like the nicest person. Well apparently, per reading a few of the ER Med Record notes from a few wks ago albeit I remember almost nothing of it I was still a very nice patient and nice to the Staff despite being pretty darn uncomfortable! I guess that is a good thing! =)
On an un-related and not really relevant but cont's to sort of amaze me observation; at UW atleast in the Peds Neurosurgery clinic and when in-pt Dr.Bragg and staff gown up in isolation measures (for a bacteria resistant bug from a few yrs ago that has not been positive/active in several years in my urine) and anyways yet at outside UW Clinics they do not use isolation measures nor does Dean Clinics, FMLH or CHW. I am by no means complaining (!!!) as it's nice to see Providers in their normal attire but it is mildly amusing how healthcare places are so far apart when it comes to how they handle patients with former drug resistant bacterias!? At CHW when I was in-pt most but not 100% of Healthcare Providers would do the isolation measures but they do not in the Lab or clinics and at FMLH they don't do any of it with me. Again, like I said I am not complaining as I find it a little ridiculous that a bug formerly in a patients urine requires lifelong isolation (gowning) measures but it is interesting..
Here are a few pics from the past few days, I love my niece and nephew! No matter how I feel these 2 are the best blessing I could ask for!
Thanks for stopping by,
Zan and I looking in Bell's giant doll house, Bell loves playing with my camera.

Bell and Zan (anyone who knows these two, knows how unusual it is to get a pic of them together!)

Sunday School kids

No comments:

Post a Comment