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Sunfish --> Thorough Update Sat Night/ Sun Morn (from The Fish Herself)

Rachel

By Rachel
in Dysautonomia Discussion

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Sunfish Newbie

Sunfish

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many thanks to all. i'll get on with a bit more thorough reply tomorrow (er....today, i.e. saturday), but for now, despite obviously being abit unpleased (understatement?!) to end up readmitted the day after i was discharged, i'm otherwise doing pretty okey dokey, meaning that the fevers have stayed settled down since yesterday/ thursday morning. thought to be related to my b eing restarted on an addition IV antibiotic. at this point we know i'm here until at least monday & it could be any number of days beyond that (though hopefully not!)

since i'm falling asleep while typing i'll save anything else for later but the prayers, good thoughts, etc are of course appreciated.

i'll try to get on to post a bit more info soon but wanted folks to at least know that i'm hanging in relatively well.

g'night!

B) melissa

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corina Newbie

corina

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dear fishy, you have been simming against the stream so many times, now you take some rest okay?! i am thinking about you and hope you will have permission to go home on monday. my wish for you is that for the days, weeks, months (and years of course but i do not dare say that out loud) to come you will be able to swim along with the stream.

sending love and good healing thoughts,

corina

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flop Newbie

flop

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Hi Melissa,

it was good to see your post. Sorry you ended up feeling so ill again but I'm glad that the extra antibiotic is keeping the fever at bay. Hopefully those bugs will get a really good kicking this time before you go home again (we want you to be able to STAY at home, not just warm the sheets for a night!).

Take care, thinking of you always,

Flop x

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Sunfish Newbie

Sunfish

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hi all!

sorry for yet again not making it online for an update until late, though i will say that i'm much more awake than i was last night at this hour! yesterday i had actually signed on around 10:30pm then fell asleep with my laptop on top of me & didn't wake up until just before 1am, which is when i then wrote my quick little post. in all honesty i'm surprised that it made any sense at all! so...for a bit more of an update....

going back to last monday, they successfully placed my new central line (called a hickman, a type of tunneled catheter) & all was going as well as could be. despite what i had been told up on the floor once in the OR the anesthesiologists decided that they could at least start with deep sedation rather that general anesthesia & it worked like a charm & without problems...yippee! i was then discharged tuesday around 4pm - not a bad birthday gift to escape - & other than localized pain/ soreness from my open wound & the new line placement, i was feeling as "well" as i ever do, had some time of birthday cards/ gifts/ phone calls from friends & families, & got my delivery of my needed medical goodies new & old (antibiotics, saline, TPN/ nutrition, IV pumps, etc). so by the time i was in bed & trying to figure out the new IV pump they'd sent (without directions) so that i could get my antibiotics hooked up, prepare my TPN for the night, & do the other bare minimum before going asleep i understandably blamed the fact that i started feeling cruddy on being exhausted, blamed my nausea/ vomiting flare-up on my gastroparesis, & blamed my being extra chilly on still being dressed for the room i had been sharing with my former roommate (a teeny tiny extra cold old lady). but in hindsight i was getting sick & starting to get the chills (just not violent shaking ones that i have had in the past, so easier to "excuse" in the moment).

once i ran my IV antibiotics & got my TPN started i managed to get to sleep though, b/c despite feeling sick i was still tired enough that i was able to have a good night's sleep, but unfortunately when i woke up the next "morning" - really early afternoon - i woke up with a fever & could obviously no longer fool myself that things (me, infection, how i was feeling) were far from where they should have been at anytime, much less just having gotten discharged from the hospital with my infection under control & on pretty much the heaviest hitting antibiotics in the book. so with my home health nurse arriving just about that time (mostly for my wound care/ packing & dressing change) & discovering that in addition to the fever my BP WITH high doses of midodrine on board was 70-something over 40-something lying down, we paged the TPN Management Team in cleveland (who manage my TPN & line care & who arranged my initial admission last week & who i'm supposed to call with any fever, line problem, etc.) we all tried to wait it out for a while & started with the home care nurse doing blood cultures but as the day progressed the fever & associated symptoms started to increase rather than moving in the other (more desired) direction & i/ we were pretty much told to stop using my new IV line & most importantly to get to a local (toledo) ER or get to cleveland for admission ASAP.

we made the gamble to head to cleveland, knowing that we were taking a bit of a risk b/c if i had gotten as ill as i have been in the past while we were in the car it would have NOT been good, but with a lot of prayer we were blessed with good weather & my fever/"health" status holding steady & arrived in cleveland without incident. & the wonderful TPN management team folks had already filled in all of my doctors here so that i pretty much had them waiting for me & a bed ready with no need to go through the ER, always a welcome avoidance.

i was restarted on an additional antibiotic, they took extra blood cultures, & after an uncomfortable but still NEVER dangerously critical night of fevers, chills & nausea i finally got to sleep around 5am & was THRILLED to wake up (or rather be awakened) a few hours later with NO FEVER....YIPPEE!!! i still felt pretty cruddy that day, if only from the previous 30+ hours of fevers, chills, etc, but it was loads better than the fevers/ chills themselves so the next issue was of course to figure out what had happened.

no need to give you the ongoing discussions/ conversations for the last several days but the working theory at this point, though not a definite answer, is that during my first admission the testing/ cultures somehow missed detecting an additional bug somewhere in my body, whether in the same infected area around my port, in my blood, somewhere else, etc. b/c when i was admitted initially (on thursday 12/4) i was started on 2/3 IV antibiotics until the cultures came back (for the most inquiring minds vanco & zosyn, the second of which is actually 2 antibiotics in combination). once the cultures did come back, however, the only one that grew was the MRSA on the port that was removed, & the sensitivity testing done on those cultures showed/ shows that the vanco was fully sufficient for treatment; understandably & expectedly at that point, probably a day or so before i was discharged, they stopped the other antibiotic(s) (the zosyn). but since i got sick not long after, & since when they restarted the zosyn right away when i was readmitted, despite not having "proof" of a specific bug that requires it for treatment the empirical evidence of how my body has responded has the infectious disease docs feeling relatively confident that it's at least part of the picture, & the fact that i had been put on 2 "oral" (via my J tube) antibiotics prior to my initial admission may have been the reason for never pinpointing the bug in the cultures (& while my being on those antibiotics wasn't enough to cure the infection(s) entirely & may have complicated diagnosis &/or treatment, they may have also kept me from getting much more ill & perhaps even been the reason i was able to get to cleveland, avoid the ICU, etc so they weren't all bad).

with wednesday evening's & thursday early morning's blood cultures thus far negative -both from the lines & peripherally - things are at this point looking good for my new central line (the hickman) NOT being infected & not needing to be removed, which is of course an EXCELLENT thing, though not entirely certain yet (aka at least for now keep up the prayers & good thoughts rather than switching to celebratory dance :P ). b/c of the possibility of it having been infected we haven't used the line since wednesday (just before we had to head back to cleveland) so the ultimate "line keeper" test, in addition to the cultures continuing/ finishing as negative is using both ports (sides) of the line successfully, a process that i believe we'll at least being starting tomorrow, probably initially with something less than TPN until we know it's okay to use without incident (aka chills/ fevers).

since we haven't been using my central line i've been on a bit of a "diet" as we decided not to beat up my veins &/or additional factors to the already complicated situation by putting in another PICC line, especially since i' just had one taken out. for anyone not dependent on IV nutrition regularly though it's not uncommon to be without much nutrition for several days when ill, so it's not really a concern as long as i'm getting sufficient fluids & electrolytes, which i'm getting plenty of via a simple peripheral line, which is also sufficient for the IV antibiotics for these few days.

so....i'll be here at least until monday, & more realistically until tuesday or maybe wednesday? as of now i'd maybe guess wednesday but obviously don't really know as it's contingent on more than one unknown at this point. if all goes well we'll have no problems when we start using my hickman (central line) again at which point they'll work on getting me restarted on TPN & may or may not try to switch the one IV antibiotic (zosyn) to a related but not identical "oral" (again, for me via my J tube) antibiotic, though if they do this i'll have to stay here for at least a day (maybe two?) to make sure that it doesn't cause problems (aka return of fevers); there are pros & cons to both approaches so i'll go with whatever they docs think makes most sense & try to rationalize the advantage of that decision accordingly (i.e. home perhaps a day sooner with more IV antibiotics vs. a day or two more in lock-up but less hassle once i escape). ultimately whatever has to happen to keep me as healthy & infection-free as possible is worth any added inconvenience, so whether i end up at home on only the IV vanco (2hrs every 12 hrs) or that and the IV zosyn (20-30 min every 6 hrs), which makes it hard to get a good night's sleep, i'll be glad to be home, something i may have to remind myself a few times if i end up having set my alarm for middle-of-the-night times for every 6 hrs antibiotics. i digress.....

i think that's about it aside from a few other loose ends...

1.the dressing changes with accompanying packing still aren't my favorite part of the day but aren't half as bad as they were initially.

2.b/c of the nasty diarrhea combined with my "normal" GI issues i'm on one other "oral" (J tube) antibiotic, flagyl, to help deal with bacterial overgrowth & balance in my intestines themselves.

3.my roommate before my short-lived escape was a sweet elderly lady but my current roomie is a bit more of, shall we say a challenge? i'll show restraint & leave it at that, but suffice it to say that if i were to write an article on my top ten "challenging" hospital roomies she'd make the cut. ah well....at least i was only feeling real ill for a day or so of the week which is when that's toughest to handle. now it's just a test of my patience i suppose? something like that....

4. i've had some pretty neat extra conversations with some folks here at the clinic that aren't directly a part of my care team but that have been really beneficial for me, & which may continue to be a good thing. not trying to be cryptic but it's hard to explain without LOTS of detail & for now it's time to move on so perhaps at another time. in a related vein one of my doctors, who was a part of some of these other conversations, encouraged me to get writing on a book so as that's something that's a dream of mine anyway perhaps her encouragement was/ is the extra push i need to get myself writing in a more organized/ purposeful fashion.

oh! and how could i forget? one of the benefits of the readmission is that i've had visits from two of my dinet buddies! and even better at times when i've been plenty well enough to really enjoy the visits. friday i had the pleasure of meeting Angelika_23/ Angela (& her hubby) for the first time as she was at the clinic for an appointment (from out of town herself) & saturday i got to see JaneEyre/Kristen, a close friend who lives much closer to the clinic than to Toledo & who, while we've now met/ hung out a handful of times over the years, hadn't seen each other for almost two years now. and while getting to see them was in & of itself wonderful, they were also both extra sweet & thoughtful to bring me different variations of one of the few things i can eat - frozen goodies that can melt & drain out of my G tube - so i've been indulging on Graeter's ice cream & delicious fruity gelato. yummy yummy yummy. we did take pictures so i'll try to get around to posting them one of these days (if they give me the okay of course!) along those lines i should really gather all of my pictures of those i've met from DINET & put them somewhere together....i'll have to count & see if anyone can top me as my home locales have allowed me to meet a good number of people over the years. and...i may be getting another DINET visitor or two in the next few days, especially nice since one downside of being in the hospital lin cleveland is that i miss out on some friends, my pastor, etc that would visit if i were in the hospital locally. but anyway....

but i now REALLY need to get to sleep as this took way longer to write than i had anticipated & IS way longer than i had planned (which i'm sure will not surprise any of you who have known me for more than two seconds B) ). i figured that more details up front though would eliminate confusion, follow-up questions, etc. ? which isn't to say that if you still have a question that you can't ask b/c you can! and there's been so much activity/noise on the other side of my room until a few minutes ago that even with my deep sleeping i don't think i could have been sleeping anyway. but anywho.....

i'll of course stay in touch with updates as i can. while i definitely feel well enough to be online it's still tougher at the hospital than at home so i'm still on a lot less than normal but am trying to get myself a bit caught up on forum posts, PMs, emails, etc. as i'm able

many thanks again for your continued prayers, good thoughts, etc & do keep them coming. i'm doing great (in the language of how things are defined in the life of melissa) but there are still some unknowns, things to be figured out, etc. so prayers & good thoughts are certainly not a bad thing! (not that they ever are in my opinion...) along those lines i have of course been glad to hear that miss flop is also heading in the right direction but i'm sure that continued prayers & good thoughts for her continued recovery would not be misdirected either. it's it's quite the mess of a moderating group we have here at the moment, eh?? my goodness!

signing off from the antibiotic-ridden (but hopefully NOW infection-free) fishbowl,

B) melissa

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Sophia3 Rookie

Sophia3

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WOW...what energy that took for that update Melissa. Thanks for filling us in and glad you got to meet Angelika and her hubby...have met and seen them a few times (Very sweet folks both of them)

I am still sending thoughts and prayers your way.....tie another knot in the rope and hang on.

Soph

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