Tuesday, May 12, 2015

Local ER, PCP, UW-ER, Admit to D6-4 (Neurosurgery), Shunt Infection and?

May 12th - Updatung (see below older update)
See below for backstory on this update ie what has transpired since last week and how I ended up in-pt. Today an EGD (upper scope of the stomach) was done which I don't have the results yet.
I got back from this test and shortly after Dr.Bragg and her NP Emily came by and had some news (rather un-expected to both of us I would say!) that the CSF shunt tap that was done Fri and sent to the UW Micro Lab came back positive for the slow growing CSF bug Dr.Bragg had mentioned but neither of us really thought would be the end issue. (A Shunt tap draws off spinal fluid, the stuff my Shunts drain off my spine/brain).

Given this positive result we'll have to remove both shunts do a week or so of IV antibiotics while they have an 'External drain' in place (this acts as a internal to external way to drain CSF) until we get the all clear.
Once the infection is cleared we'll schedule another surgery and replace the shunts internally. Dr.Bragg mentioned she is considering moving the TPL Shunt back from it's current location to where we formerly had it in the lumbar spine given we did have somewhat better results w it working better when fluid drained from there to pleural space.
I'll update on all of this hopefully sometime in the next few days, Dr.Bragg said the shunt externalization would be the 1st case Fri and as far as the gallbladder issue I can't remember for sure but I think she said if they want to she will try to coord. their doing that with this surgery.

Local ER, PCP, UW ER and Admit to D6-4 (Neurosurgery)

Last time I signed off of here I don't think I had any clue the days after would be quite this eventful, wow!

See below for what's going on but talking to Dr.Bragg this morning about General Surgeries plan and tentative thoughts she said to me (which in turn made me almost bust out laughing albeit that hurts like heck to do!):
"Your body reads the 1st sentence of the manual and then makes it's own rules" - Dr.Bragg
So funny and kind of pretty darn true given not much ever presents classically!
I was in the local ER Thurs morning, due to side/abdomen/back pain that started earlier in the week as intermittent and turned out to be gallstones apparently. I honestly had had not idea what it was just that it hurt really bad and since Monday, the beginning of the wk. the symptoms only getting worse.

The opinion of the ER doc and Radiologist at BDCH was it was 1 large gallstone and would not pass on it's own so I needed to get surgery as soon as I could but the ER doc said 1. There's no way we would do it here given my complexity (nor would I ever have surgery there optionally) and 2. You'd probably have to have it where your Neurosurgeon is due to your shunts and especially due to the VP Shunt end runs right by where they go in for a gallbladder surgery.
My mistake when at the local ER was NOT having that dr. talk to Dr.Bragg to try to better sort this out and where did it for sure need to occur. I instead spent Thurs afternoon pretty much camped out in my recliner, moving as little as possible and eating/drinking very little while making calls to Dr.Bragg's office, my Primary dr's office and to my Insur. Nurse Case Manager while also sorting other stuff from Weds's Cardiology Appt.

Needless to say by Thurs night I was at a little bit of a loss and unsure what to do but a tentative plan with my Primary dr. (PCP) was to see her NP on Fri morning and they originally planned to direct admit to Dean St.Mary's Hospital. Later Thurs night I got a message from Dr.Bragg better clarifying what she felt about the whole situation and so re-thinking Fri's plans. Thurs night I pretty much drugged myself asleep which is something I NEVER do but was so tired and knew otherwise I wasn't going to be able to sleep.
Fri morning I did see my PCP (the NP) who was working w my actual dr. and is Dr.Simpson's Nurse Practitioner. This Appt went ok but was slightly frustrating albeit I don't blame it on my drs.
They had changed their mind once we had the info directly from Dr.Bragg and decided we sould try to get a consult from a Dean Surgeon "to make sure it's covered by your Insur." which I did understand their thinking but I also knew it was unlikely I was going to get through this wknd given I was not drinking or eating much of anything.
Even walking even short distances causes the pain/discomfort to worsen to an extreme in my abdomen/side-radiating to back.
I made some more calls once I was done at the PCP office as the soonest the Dean General Surgeon's could do was Monday and I wasn't sure if I should just go to UW's ER.
I really felt most likely they would admit which would negate the Insur. out of network issue (this per my Case Manager) and I knew I needed help with this.
I did end up just coming over to UW around 1, checked in at the ER and after about an hour was taken back to the initial screen where the Nurses start IV, do an eval, put in for the dr., etc.
Thankfully atleast this Nurse also was willing to use my Port!
Much waiting around later the ER doc came by, she did her exam and ordered labs and the 1st ultrasound.
After all this I came back to the actual ER and waited some more which was long but honestly I felt so bad I just did not even care. The Neurosurg. Resident(s) on-call stopped by "because we saw your name and wanted to say 'Hi' and talked about what they thought the problem might be. Needless to say their thoughts where not Dr.Bragg's thoughts!
A little while later the Neurosurgery Residents would get more involved in my care while in the ER including doing a shunt tap Dr.Bragg wanted done which was to look if there was any infection.
I hadn't realized it but Dr.Bragg wasn't actually on-call Fri night and so she really didn't have to take the time to call her Residents or get up to date on what was going on with me.
Her Residents told me she specifically told them regarding me they where to call her directly.
I think I heard her call them no less than 3 times and who knows if it was more regarding questions she had or something she wanted to tell them about my care specifically. I love that about her, that obviously she cares and she takes the time when it's really her time off!
I think it was around 11-11:30 I finally came up to the Neurosurgery Fl. once the Neurosurg. and General Surgery Teams worked out where they wanted me to go. If nothing else if I was going to have to be here honestly I am glad atleast it's on this floor b/c many of these Nurses just make it a lot better and a little easier to get through!
Sat., I didn't see General Surgery at all but Dr.Bragg stopped by and just let me know what her thoughts where, that she wasn't going to give up till we had answers and that we'd figure it out.
I saw Dr.Bragg's Partner Sunday morning, they take turns rounding every other Sunday and he just kind of reiterated what Dr.Bragg's thoughts had been that they didn't think it was the shunt related but Dr.Bragg would work w the General Surgeons.

Sunday evening the actual General Surgeon on my case stopped by, she seemed very nice and especially like she had put in the effort to get up to speed on my history with Dr.Bragg + especially she laid out that she felt the various scans all looked really, really good but based on others findings and her own exam she did feel we should investigate the gallblader or area around it and explained what a few things could be potentially in this area causing symptoms.
First due to my risk especially w the VP Shunt she felt we should re-do the ultrasound (to look at and see especially if the wall around the gallbladder was getting thicker though I can't remember what that would mean).
This dr had ordered what's called a 'HIDA' scan on Sat, this also looks at gallbladder function through a long series of PET Scan images.
The other test she felt we should do is an upper endoscopy - or also known as an EGD, a scope of the upper GI system and I think airway (but I may be wrong on that second part, I don't know that it has anything to do with airway other than they go down your throat I believe w the scope which if anything like the last TEEs (also uses a scope down the throat) I sure hope this drs/Tech's use the smallest probes they have!

This EGD is to rule out an ulcer or other problem that could be causing the symptoms though she does not feel that is the case and is doing it more as a precaution to try and absolutely rule anything else out before they take the risks involved with gallbladder laparoscopic (I assume) surgery and the fact she had concerns with this and any knick to the gallbladder or leaking of bile goes directly (apparently, who knew) in to the peritoneum where my VP Shunt catheter sits/drains it's CSF.

Dr.O'Rourke just said if we have any concern of contamination your VP Shunt will have to be externalized and I am sure you would rather not have to sit here even longer with a catheter hanging out of your body. Although I do feel better when the shunts are externalized and my headaches have been down right wicked here the past few days I also absolutely do not if we can avoid it want to go through an externalized shunt to!
I fully realize it could happen but am glad Dr.O'Rourke and Team are trying to minimize these chances where possible for shunt contamination!
At this moment we just started Plasma infusion to reverse INR and they'll also give a dose of oral Vit K. as INR is still 3.4 I believe my Nurse said. If we can get it down in-time they'll do the scope yet today. Prior to any procedure such as this scope I did make sure the Nurse let the GI people know we need to give Solu Cortef injection stress dosing so hopefully that won't be a fight w this procedure! I never hold my breathe though.
Unfortunately this wknd is my last Sunday School class for the year, till Fall.
I missed this past wknd due to being here and missed the wk prior due to being in Providence. I am hoping most of my kids will be in VSB as I do have a small gift for each of them and I really loved my class this year. =/
Will update again when I know something further, thanks for stopping by,

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