Yesterday's shunt removal surgery went ok, per Dr.Bragg the TPL Shunt wasn't working which maybe this explains the change in leg-nerve symptoms and overall how i've been feeling nerve symptoms lately but also explain why Headaches had been much worse. It does make me wonder when we had the sudden, severe shunt failure in Jan, could the TPL Shunt have not working then already?
Dr.Bragg was able to remove the VP Shunt and replace both shunts with a temporary EVD which is why I am in Neuro-ICU.
In order to get the shunts removed Dr.Bragg had to remove 3 connector pieces during surgery in order to be able to pull out the catheter. I couldn't remember why we used them at times but Dr.Bragg explained bc my skin is so thick and hard to tunnel catheters straight through she often had to use these connector pieces to get the VP Shunt in to the Peritoneal cavity (where it drained) and get it all from brain/ventricle down neck/upper chest and on down to abdomen.
She also said there was a brownish crusty (I think that's how she described it but ) material at the TPL Catheter (at the end part of the TPL Shunt. I think per ID drs and Dr.Bragg they cultured this shunt catheter and send it to lab to make sure no infection or that there is not a 2nd infection going on?
In any case we have the External drain in place when they took out the shunts Fri, (yesterday) and I am in Neuro-ICU till infection is cleared and we can put both shunts back in.
The actual infection found earlier this wk is not yet cleared per Infectious Dis. drs, though everyone says it should be a relatively easy bug to treat and get rid of. It is the same infection I had 2 other times.
there are 5 incisions, 2 on my back, 1 on collarbone and 2 on my head. Sad part about that being my hair had finally gotten to where the new growth was long enough it didn't stick up under my other hair anymore.
I know it's onlt hair you have little control over anything else in a hospital hair had just gotten to the pt from the last revision in Jan that it didn't stick out from the rest of my chin length hair! I know it's vain but little things like that matter when
Last night and this morning I was pretty tired so needless when the Access Team person came and woke me up at 4 this morning I sent them back out and asked that they come back later. Vitals where every 2hrs last night and all machines where hooked up, with everything going off every 1-2 hrs.
I also had asked the Nurses if we could change the setting on the EVD and they where like 'oh no we cant do that you'll overdrain. Having been through EVDs before I know how they work and thankfully Dr.Bragg told the Staff here I could get up on my own and clamp/un-clamp the drain on my own.
Definitely glorious to have gotten the turban wrap off this morning and to get un-hooked from all monitors minus the ICP monitor. A little independence goes a long way! l feel crabby today but no where near yesterday and I took a nap which helped a little and hopefully will sleep atleast semi-ok tonight!
I don't know what Dr.Bragg's plan is re: replacing both shunts other than she thought we'd replace both at one surgery (we did it a bit differently last infection 2.5yrs ago). I am not sure if she'll attempt to tunnel the catheter back in to Lumbar spine again vs where it currently sat in the Thoracic Spine. I can't imagine she'd want to put both in to the same (peritoneal/abdomen) draining area.
Pharmacy needless to say is driving me bat.s**t. crazy. First lets pump someone who normally restricts how much they drink and pump them full of fluids. It's not so bad when fluid is very minimal through the IV per hour but at times this has been ALOT of fluid was being given.
I'm not sure what these Residents think but gee if someone is on high dose Lasix AND Spironolactone wouldn't that suggest they shouldn't get a lot of unnecessary fluid? I do have the PCA pump so a small mount of fluid has to be given but not the high doses of fluids they are running in.
To me a patient being on those meds would imply their hesrt is working overly hard already, fluid only makes worse these symptoms!
To top it off the N-ICU Pharmacist changed up the way my meds are given during the day (there's a reason why I take certain ones at certain times of day!) Triple pissing me off is the Nurses and Pharmacists keep saying "oh we can't give you your cardiac meds and especially the Lasix/Spironolactone bc your blood pressure is so low?!? Hello my Cardiologist has me on these meds for a reason and low blood pressure is not his worry! Today they wanted to not do any of the water meds (Lasix, spiro) and restart it tmrw. WHAT?
Believe me I brought up every single reason why I am on all these cardiac meds and why, no we can't just skip them. I have enough cardiac issues already much less making it worse!
B/c some of the meds, especially the Lasix/Spironolactone where omitted yesterday and yet I wasn't asked or even told about it till I asked if I could please have these before 8 or 9 tonight! The Pharmacist finally is calling the Resident but let me tell you if they don't given it it's quite possible I'm going to ring someone's neck be it Nurse/Pharmacist or Resident!
It is 8:15 now and they are just sorting this out so I'm sure much sleep won't be in my cards for tonight due to having to get up so much to pee!
I just don't understand why this Pharmacist(s) wouldn't 1. follow the D6-4 med plan AND talk to the Patient re any changes, most of us DO know our bodies far better than some dr that's met you a couple times at most!
In any case if anyonreading this hasn't figured it out I HATE being in Jail (aka ICU) due to so many restrictions.
In any case, not the most positive update (atleast from an I hate this perspective) but hopefully each day in here will get a bit better.
Thanks for stopping by,
Erica
PS: Thank you to everyone that wore purple yesterday, sent pics and or checked in to see how things where going. Is funny how friends who are long distance whether MPS or not tend to be more supportive than some of my family and for that matter friends at home. I'll try to post pics soon in a different blog post/update.
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