Thursday, May 21, 2015

Neuro-ICU, still externalized.... booorrreedddoommm

Not really much to update, just hanging out here in Neuro-ICU till the CSF infection clears/we get the all clear to replace both shunts.
Per Dr.Bragg who works with Infectious disease drs (who in turn round each day and I have a chance to ask questions or just get their perspective) we do have a clear CSF cultures and now is just a matter of waiting 7 days to make sure cultures stay clear. This would bring us to Fri so Dr.Bragg was going to look at her schedule and likely we'll put the shunts back in place next wk. Unfortunately next wk is Memorial Day wknd which means yet another day here. By the end of each day I am about at the end of my rope! I like being left alone and there's a reason I live alone!
Since Dr.Bragg talked to them and explained my pressure situation the Nurses have been much more laid back about my getting up and moving around leaving the drain un-clamped for short periods when I stand to dump more CSF (which in turn provides greater relief of symptoms).
Sunday night I went to sleep (have been sleeping in recliner) feeling ok, not perhaps awesome but atleast ok. I woke up at early morning, around 2 throwing up and with a bad headache which kept on throughout the rest of the night till Monday. When Dr.Bragg came by she lowered the drain to -5 which has helped significantly with symptoms and my standing up with the drain open for short periods = between these 2 things feeling the best I've felt in awhile. There are many times I fall asleep despite it being in the recliner that I wake up w a headache but this I can get on top of with standing up to let the drain open and release bigger amounts of fluid.
Now if only we could better replicate this w the shunts! =)

All day Weds I had been thinking it was Tues when really it was Weds but even that I could deal w surgery next wk, thinking maybe it would be on Monday though I do know that is a clinic day for her. What I had completely forgotten about is that this wknd is Memorial Day wknd so my guess is surgery will be Tues or Weds... Hopefully tmrw Dr.Bragg will have an idea but honestly this realization was really, really depressing! Being stuck here on a 3 day wknd is really going to suck. It is also the 1st wknd that Cedarburg Flea Market is held (held 4 times a summer/fall) so will miss that.
Probably in reality it all wouldn't be so bad but some of these Nurses Neuro-ICU drive me crazy, mostly bc some if your asleep will do their ICP # check (every 2 hrs) and the vitals (every 4 hrs) when your asleep and I am not a heavy sleeper so never sleep through this. Some nights are not bad at all given some Nurses will skip 1 or 2 of these favoring sleep over #'s and that really makes a HUGE difference on how the next day is. - thankfully this atleast was changed to everything only has to be done every 4 hrs and at night only at midnight then not till 8am.

I am hopeful when we replace the 2 shunts it will equal having 2 working shunts in place should equal feeling good for awhile!?!
I keep forgetting to ask Dr.Bragg if she has decided on staying w the TPL Shunt or if she's still thinking about putting the shunt back in to the lumbar space where we did seem to have better luck and if we'll stick w 1 shunt draining to the pleural space. I've not heard otherwise so assume she'll go back in to the pleural space to drain with 1 shunt and 1 draining to peritoneum.
Otherwise it's just been a really, really long week! Will update sometime soon,
Say a prayer surgery is early next wk and I don't die of extreme boredom this wknd. =/

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