Update From The Fishbowl--> Updated Monday @ Noon

[Sunfish]

hi all!

thanks so much for your prayers, good thoughts, crossed fingers, messages, etc thus far. all are - as always - much appreciated, though if you don't mind i'd rather you not stop quite yet . this is the first i've been able to get on the computer since my admission thursday evening (so sorry for not updating anyone sooner.)

here's the current scoop (so that you can tailor your prayers, good thoughts, etc. accordingly!):

upon admission i was started immediately on several IV antibiotics (the big guns...vanco & zosyn for particularly curious minds) & then did have surgery friday morning to remove my port as the "pocket" it was in in my chest had become infected. this is different than my previous infections as they didn't start in/ around the lines/ ports but rather started by way of bacterial overgrowth in my intestines which then spread to the lines/ ports after-the-fact. in some ways this infection is a bit more "typical" in the world of line infections, and while the worst of the infection was/ is localized (around the port), the fact that i had a fever & other systemic symptoms earlier in the week is pretty clear indication that it had spread to some degree as well, though obviously no where near to the degree/ severity that i've dealt with in the past.

at the moment i'm relatively "status quo", & while sore from the port removal/ infection in many ways i'm actually doing better now than the week before my admission since the infection is on its way to being controlled via the plethora of antibiotics i'm on as well as merely by way of the port being removed. the worst thing i'm dealing with is the daily dressing changes/ wound care as they entail pretty aggressive cleaning/debridement/ packing of the wound (where the port was) which is probably one of the most painful things i've ever encountered though, thankfully, is only once a day & relatively short lived (though that was little comfort for those 20 minutes!).

other than the wound care & antibiotics though we're pretty much just waiting on blood cultures which, due to my having already been on two antibiotics several days prior to admission (via J tube), are fairly unlikely to actually show anything definitive. for the time being i have a PICC line - yes the "impossible to place" PICC line! - which they placed while i was "out" during the port removal and, allegedly, it wasn't even too tough for them to place, which is just another testament to the reason that most all of my care is now managed here at the clinic rather than my more local hospitals (as only one of many examples, the last time they tried for a PICC at my local hospital the head of radiology & the head PICC line nurse spent almost 3 hrs & tried 6 or 7 times - unsuccessfully - before i was labeled an "impossible" placement.) while certainly no place is perfect, all in all the clinic is just SO much better able to handle someone with my level of complexity & i feel SO much safer being taken care of here...almost to the extent that i would feel better being left here alone than being in one of my local hospitals with my parents around 24/7. but anyhoo.....

the PICC line, as wonderful as it was/ is to be able to get one afterall, is only something they're using as a temporary line for my IV antibiotics, fluids/ electrolytes, & minimal nutrition (as they don't want to "encourage" bacterial growth with infection in the body) until they can ensure that my blood is entirely clear of infection. once my blood cultures are definitively clear, though, & the localized infection/ wound is at least headed in the right direction, i will have surgery again to have a new central IV line placed, probably a hickman, which is a type of tunneled catheter that, for someone on TPN &/or saline pretty much around the clock, is - at least here at the clinic - actually the preferred line type (as opposed to a port). for instance the type of "pocket infection" that put me in the hospital as we speak can't happen with a hickman, & since i'm accessed & infusing almost all the time i'm rarely able to enjoy the advantages that ports bring to many anyway, so those things taken into consideration combined with the extent to which i feel good about & trust the treatment team(s) here i'm totally on board with not getting another port and, if all goes according to plan(s), i should have the hickman placed in the OR on monday. they were able to take out the port under heavy sedation rather than general anesthesia so hopefully the same will be doable for the placement too as that takes SO much less out of me than general (and knocks me out for so much less time). that said i am long over any pride i used to have in terms of showing i was/ am tough enough to have procedures without sedation/ pain meds so whatever they have to do to make sure i'm not feeling the cutting & the like is fine by me!!

at that point, if all goes well & the hickman is placed on monday, i may be able (hopefully!) to head home on tuesday & continue the IV antibiotics from home (though i certainly know better than to fully count on a proposed departure date entirely until i am actually wheeling out the door!) doing multiple antibiotics in addition to my "normal" TPN & saline routines is never fun but i've done it more times than i can count & it's far superior to staying in the hospital or any other sort of facility (as i've had to at times when my body has been more severely ravaged by infections.)

it's obviously never enjoyable to be fighting infections, have to be in the hospital, have surgery, etc. particularly around the holidays. in addition to the advent/ christmas season my birthday is tuesday. some of you who have been around a bit longer will remember that this isn't the first year i've been in the hospital with infection/ sepsis in early december; this is actually the third year that i've had some sort of sepsis over my birthday but last year i was lucky to be home, while two years ago i was in the hospital as i likely will be this year. ah well. but at the same time i am still INCREDIBLY thankful for the fact that, while certainly sick earlier in the week, we were able to catch & treat this infection without my getting NEARLY ill enough to end up in ICU, on life support, etc which has been the case for me many times in the past. so all in all i'm a thankful & lucky fish who was glad to be able to get my bags packed, have the time to safely get to cleveland by car, & avoid all semblances of EMS, ERs, & ICUs along the way .

so, as always, thanks again - so very much - for your prayers, good thoughts, etc thus far & i certainly continue to appreciate & covet them over the next days as well, particularly for the infection to clear up entirely & for the surgery monday morning. due to all the lines i have already had, i have a lot of scar tissue that makes the placement especially difficult. placement is usually about a 30-45 minute procedure/ operation &, as some of you again may remember, my last placement (last january) took over 3 hours, though i am hopefully optimistic that the fact that i'm here at the clinic will, as it did with the PICC line placement, make a difference with the other line placement as well so that it won't be nearly the ordeal/ trauma.

love to all. and seeing that we moderators seem to be dropping left & right everyone behave!!! (i thought hospitals here "shut down" to a large extent on the weekends but i cannot believe our poor miss flop is being left with her hip dislocated the entire weekend!!!)

i'll be in touch as i'm able...

melissa

[Rachel]

Hello dear Sunfish!

It is good to hear from you. Thanks so much for taking the time and energy to post an update. I'm glad that the surgery went well and that they were able to get a PICC placed.

The daily dressing changes don't sound fun at all. Ow, ow, ow. I hope the wound heals up quickly for you.

I'll keep you in my prayers as you go into surgery again on Monday. I hope that you can have a quick recovery so that you can go home on Tuesday. Here's to getting home on your birthday!

Take care,

Rachel

[juliegee]

Hey Melissa-

You sound so much better than last time- Thank God! I'm still sending prayers your way until your home- hopefully BEFORE your B-Day for a change:-) Keep us posted on your progress & we'll do our best to behave

Hugs-

Julie

[ajw4790]

Melissa,

Hi! Sorry I hadn't replied yet to your other post. I was sad to see that you had an infection yet again. But, I was glad to hear that it seemed like it was caught early and that the source was automatically found and able to be taken care of! I hope that things continue to go well for you in the hospital and that you are able to spend your birthday and holidays at home! The wound debridement/packing etc. sounds VERY OWWW!!!! Oh, my! Everything you have to go through! You are such a strong person! I hope things work as planned and you are out of your Cleveland fishbowl soon!

Sending positive healing thoughts!

P.S. I am not sure if you saw my previous post semi-recently thanking you for recommending Dr. Shields. That helped me so much!!! So, I wanted to make sure and say thank you! I am horrible about returning PM's etc. though... THANK YOU!!!

[Sophia3]

SO good to read your update, Miss Sunfish.

My oh, my...what a lesson in permanent caths/piccs/ports or whatever those access lines are called.

I am glad you are getting competent care but sad for the pain you must put up with.... I find myself checking in sometimes here just to see how many are doing (and as a thread drift, was HORRIFIED to hear Flop is left waiting over the weekend for her dislocated hip! )

I am sending thoughts and prayers across the frigid air -from one corner of the state to another, to you sweet Melissa.

If you get a chance to LISTEN to things online, here is a link of a band I listen to...sound is not great as it's a FLIP video of my sisters I was borrowing..but the Fidgety Feet is a fun song (though I missed the very beginning...song recorded in 1918 and STILL a New Orleans Jazz aka Dixieland staple) Maybe some tunes to take your mind off things.

http://www.youtube.com/profile?user=agnesz123

Ffeet is the last video. Hope you can find something to occupy your mind as you recover from this stuff.

Sophia

P.S. Sunfish, Flammes D'Enfer is French sung song (Cajun) and the lyrics mean Flames of He double hockey sticks. UPtempo song. But you may feel like you have walked thru the Flames of **** with your tribulations!

xoxo

[momofsara]

Dearest Melissa--So glad to hear you have the "bugs' on the run. Sorry the wound care is a big owie,,,,,, . I'm sending very positive thoughts and healing prayers your way. I'm confident your procedure on Monday will go smoothly and you will be "paroled" soon. Take good care of yourself. (((((((((((((Melissa))))))))))))) Sara sends her thoughts and prayers for you also. Susan

[ladyt]

hope u gett better soon.. and have a nice birthday

[Megan]

Sending thoughts & prayers your way!

Meg

[Sunfish]

hiya all-

thanks for the continued prayers, good thoughts, messages, etc. and thanks for the music links sophia. the hospital wireless/ internet is a bit goofy so it unfortunately blocks a handful of websites, including youtube, facebook, etc; it's the same one used by employees so i suppose it's an effort to keep them on task while at work, though as a patient it is a bit annoying. obviously not a huge deal though & all in all i can get to most places that i need/ want to be, most importantly my email & of course here on DINET .

not too much new to update on, which of course isn't particularly surprising since it's the weekend. the one added bit of info is that my port itself did start to grow bugs in the cultures, specifically staph of some sort, so that just affirms further (not that there was any doubt) the fact that it was very good we got the port out when we did. depending on what type of staph it ends up being (which will be known tomorrow as it takes longer for that degree of specificity to be determined) i may still be able to head to the OR for the new line placement tomorrow &/or it may have to wait until tuesday as the ID docs may feel the need to do a few tests to make sure there's no infection hiding out anywhere else in my body (heart, titanium plates in my neck, etc), though my symptoms - or rather lack there of - point toward that being pretty unlikely. if they do feel the need to run those extra tests though the line placement will get pushed back until after they're done, most likely tuesday or perhaps wednesday. and then most likely i'll be able to make my escape the day after the surgery/ line placement, whether it ends up being tomorrow or tuesday or wednesday. so...i'm obviously hoping that it's tomorrow so that my escape can most likely be tuesday, but as i've said previously i trust the treatment team here immensely so whatever they feel has to happen will be met by some of my questions but probably not too much opposition.

so that's about it. if i end up having surgery tomorrow (hopefully!) it's pretty unlikely that i'll be online at all but will get on or leave someone a message as i'm able. if it's not tomorrow i'll update with anything new i find out, i.e. when it is going to be, but regardless no worrying if you don't hear from me for a day or two as that's not necessarily an indication that anything's "wrong"....just perhaps that i'm zonked out for a day or so post-surgery, testing, etc.

as always, continued thanks for any & all of your prayers, good thoughts, etc. they continue to be much appreciated. and i won't be bashful in asking right out to keep 'em comin!

love to all,

:-)melissa

[flop]

Get better soon sunfish! Glad to hear that you are getting good care at Cleveland, I hope you get to escape home soon though!

best wishes,

Flop

[Ernie]

Hi Melissa,

I will keep sending positive thoughts for you. I hope you have your surgery tomorrow. It's nice to sleep in our own bed.

[DancingLight]

hey me!

so glad i checked in and saw your update!!!!

i really, really hope that you don't have to have surgery ON your birthday...

thanks for keeping us posted on where things are at and we'll try our best not to worry and use that worry energy to instead send good thoughts!

no facebook eh? are you going through withdrawal?

okay, back to resting for me....but wanted to pop in and say hi and let you know you are in my thoughts continuously and we'll all keep checking for updates!

love you,

and early birthday wishes in case you are actually completely zonked out on the day OF your bday....

i'm grateful for teh care you are getting there....big relief...

love you,

em

[Sophia3]

good to hear an update Sunfish!!

still sending thoughts and prayers for some speedy intervention so you can make the great escape!

Soph

[Tessa]

Dear Melissa

Thank you for your effort to update. You do not need to say sorry for not doing it earlier... My Godness, how could you do it while in Hospital and ill?

I am glad to see that you are much better than last time and with such a possitive attitude.

I am sending prayers and good thoughts your way and hope that everthing turns out well for you to be recovered as soon as possible.

Love,

Tessa

[Sunfish]

hiya folks -

for today's update, obviously i haven't had surgery yet (as i would most certainly not be online if that were the case), but i did get word not too long ago that i'm scheduled for 2pm so i'll be carted off sometime in the next hour/ hour & a half or so for the placement of the new line (hickman/ tunneled catheter). for better or for worse the anesthesiology team has decided that they need to use general anesthesia...mostly b/c with any degree of sedation they're less able to control/ monitor my breathing which has at times been an issue due to my apnea &/or who knows what. essentially they've gone through my file so between that & i guess (though i didn't know at the time) some issues during sedation the other day (when the port was removed) they feel that i need to be intubated; it's not a decision i'm thrilled about but at the same time i trust them immensely & thus don't question the decision, but it will mean that recovery will likely be a bit more drawn out in the short term (aka it will take me longer to "perk up" so to speak).

for other news the sensitivity testing (aka which antibiotics will kill the bugs best & which specific type of staph it was) has come back on the cultures from my port & while it did end up being MRSA, the vanco is sufficient (& even good) for treatment - good news as i'll only have to mess with one antibiotic at home over the next few weeks rather than two.

for other good news the dressing changes/ debridements of my wound aren't nearly as bad as the first day. still not fun, but between our treating with extra IV morphine just before (yea drugs!) & the fact that the wound is much further healing along in the healing process yesterday & today i made it through the process with only making faces & clenching fists rather than the tears & screaming of the first day. so definitely headed in the right direction, and probably not too many days left of it needing to be packed/ debrided at all (after which it will just be a simpler dressing change).

so....that's the scoop. the current word is that i'll likely be discharge wednesday, though tomorrow afternoon isn't an impossibility so perhaps i'll get that early birthday present. again, while i'm obviously not thrilled to be here on my b-day, i'm largely just thankful still that we caught/ treated this infection without things elevating to the severity of illness (septic shock, ICU, etc) that i've dealt with in the past, & on i'll hopefully/ likely be able to be at home for christmas which, if i had to choose, would be my preference since that has so much more effect on the family (& on me!)in terms of routines/ traditions & is the one holiday that i've never not been home for, as well as one of the few that i've never been in the hospital for. so...while i'd obviously rather celebrate my b-day at home, don't worry too much about my being locked up for my special day. such is life, i've spent birthdays in l'hopital before & managed fine & will do so again, will at least not be knocked out (i.e. surgery/ anesthesia) tomorrow & will request some birthday spoiling by having my mom make a trip to the cafeteria for a smoothie or milkshake (i can drink liquids as long as they're able to drain out of my G tube), & in some ways will be able to "double up" on the celebrating as i'll have a mini-celebration here (some cards, etc) & then the rest of my birthday whenever i get home. so not all bad.

thanks of course for the continued prayers, good thoughts, etc. i s know i sound like a broken record but they are continually appreciated. and for anyone reading this in time you can add extras around 2pm.

love to all,

melissa

[Megan]

Sending good luck & prayers your way for your surgery & recovery. I'm glad you're dressing changes aren't quite so excruciating. Not fun, but you seem to be hanging in there!

Meg

[Rachel]

Dear Melissa,

It's good to hear from you. I'll be praying for you as you go in for surgery this afternoon. I pray that all goes well and that you will recover quickly. I'm glad that the dressing changes and debridements aren't as painful now. Keep hanging in there. You have such an amazing attitude and peace in the midst of all of this. You are one tough and determined fish.

Definitely request some birthday pampering tomorrow.

Love and prayers,

Rachel

[wareagle]

Just wanted to add a "me too" to all of the good thoughts and prayers coming your way. Hope you get to go home soon!

[ken870]

i like to say that i hope everything goes allright for you during your hospital stay and may god bless you and keep you in his arms.

[Heiferly]

I hope today went well and that you get some good rest tonight! Hang in there, and hopefully they'll have you headed home soon!!!

HUGS!

[MightyMouse]

Yo fish! Get better, your traveling bowl isn't nearly as nice as the fishbowl you've got at home. We've changed the water for you to welcome you back when you are ready.

Nina

[Maxine]

Sending prayers your way Sunfish. I hope things work out well for you, and you can have a nice birthday.

Your a strong person to handle all of this, and keep the positive attitude you have.

I admire your strength, and sincerely hope you get a break for the holidays, and a future filled with hope for better health.

HUGS,

Maxine :0)

[flop]

Hi Sunfish,

I hope your line is/was fitted today (I get lost with the US/UK time difference) and you are soon headed for the luxury tank that is your own bed at home.

hugs and prayers,

Flop x

[mkoven]

Hope you can heal up and get home asap!!!

Thinking of you,

Michele