Debbi Bifulco Update

[Debbi]

Ah, another day in paradise...

The HHC nurse was supposed to be here by 7:30 this morning, so that the blood draw could be complete before I infused the antiobiotics.  At 7:15 sthe owner of the HHC company called to say that she'd just left and would here in an an hour!!  A really irritating conversation ensued wherein the woman told me how inconvenient it was to be here this early, and how early she had to get up, etc, etc.  I was almost speechless!  I suggested to her that her problem shouldn't become my problem.  Long story short - the IV company has now fired the HHC company, a new company is coming tomorrow to do the blood draaw and dressing change (now 3 days past due...)  I am sure this next company will be good.

So, after the early morning excitement, I got in my car and drove about 30 minutes to the Kessler Institute to have my first facial therapy session - which went great!  I have a whole bunch of new and very specific things to do now to start getting the nerve "awake."  I'll go back next week for some additoinal eye exercises and a progress check-in. 

At least now I have something I can be in contol of, which feels great.  I already did one round of exercises and will do another tonight while my IV is infusing.

And, now, i am going to lay down and take a much-deserved nap.

More later...

Debbi - still PICCed in NJ...

[leapyrtwins]

Debbi -

in addition to being PICCed, it sounds like you were also pissed off - with good reason!  Sorry you had to endure that incident.

Glad the facial therapy session went well and I'll keep my fingers crossed for that nerve to "awaken".

Good night 

Jan

[MaryBKAriz]

OH MY GOSH! That is unreal...I would have been furious! I am soooo SAD  you had to endure it, but it does sound like IV company took it seriously. I hope you are getting some rest and dreaming of a nice island paradise!

Mary

[wendysig]

Hi Debbi -
Good for you.  No one should be treated that way.  It's not like she was doing you a favor, it's her job (or was her job).  Glad to hear things went well  with your facial physical therapy.  I know what you mean about being in charge of something making you feel better.  This experience makes you feel so out of control, having any contorl over anything is a plus.  Hope you enjoy your nap.

Best wishes
Wendy

[cmp]

Wow, sounds like there's one HHC nurse out there that ought to consider a different line of work... (Glad the IV company worked with you to rectify the situation, at least).

I'm sorry to hear things are dragging on with the antibiotics/PICC line, though as Dr Louie pointed out it's your best course of action. Re how to shower with the PICC line in: Can you use Tegaderm to seal it off? My mother had a pleural catheter in her lung for a few months earlier this year, and had to protect the place where the tube came out from infection, which could have happened with immersion (so no baths or swimming), but after the initial incision had healed (which I'm guessing yours has by now?), she was allowed to shower with a dressing and Tegaderm patch to keep everything dry. I don't think she found showering that way too inconvenient.

Very exciting report about the facial therapy--hope your nerve recovery moves along at a brisk pace, and provides a healthy and positive contrast to this horrible infection you've had to cope with!

[jerseygirl]

Debbi,

This is fantastic news that your face is better! I hope you turned a corner with your face and it will be back to normal really soon!

Sorry about your PICC line but it sure beats being in a hospital. I would give anything to be back at home with having any kinds of lines attached to me 20 years ago when I was at NYU for 30+ days and was visited by Dr. Louie as well as entourage of interns,residents, fellows, other doctors, etc,etc. Remember that? As my roommates I had ladies who were prepared for spinal surgery and were given enema, pituitary patients who became incoherent and incontinent after surgery, etc. This is not the way to meet people. You actually have a very nice roommate and even a luxury to fire your nurse. You can't do it in a hospital. I understand PICC line is a nuisance but it actually saves you from the hospital where you eventually acquire PSTD. Hang in there! At least PICC is temporary and hopefully you wouldn't need it after another 10 days.

              Eve

[Debbi]

Hi All-

Just hooked up to the PICC line, so figured I'd do a few posts while I'm hangin' out.  As always, I really do appreciate the words of encouragement and support.  SO many times I wonder how people can possibly go through all of this without this kind of support.  As much as friends and family try to understand what it all feels like, they can only imagine - whereas YOU actually know!  So, again, thank you to everyone on this forum!

Eve, I can't even imagine spending 30 days in the hospital!  Yes, I can just picture the endless parade of doctors, interns, residents, fellows, roommates, and sightseers.  And, yes, the PICC line is definitely the better option!  I guess I had to whine for a little while, but I'm reconciled now! 

I am really glad to be getting a new nurse.  I actually had to remind the last one to wash her hands twice!  Can you imagine?  Eek. 

Question for people who've done facial therapy?  (And I may post this elsewhere, too)  Has anyone used something called a Z-vibe?  The therapist recommended it, so I ordered one today.  I think it is actually for small children, but apparently useful in stimulating the nerve.  Hope, if you're reading - have you had anything like this?

Well, off to read about everyone else now...

Debbi - still PICCed off...

[wendysig]

Hi Debbi-
Just checking in to see how you're feeling today.  It looks like the suns come back out, thank goodness.  I visited Jan's picture posting last night and reread her description of her first day with her BAHA and sure enough it did the trick.  I got in a good laugh before bed, slept like a baby after that.  I also got a call from a friend from the Cyberknife support group.  Do you know Ceeceek?  She and I met over there, but I stopped posting there once I decided to have surgery.  Once that decision was made, I felt like I didn't belong there  anymore.  I really enjoyed talking to some of the people there though and Ceecee was one of them.  Drs. Medbery and Spunberg are really great too.  I knd of miss them sometimes, they give great advice to everyone there.  Anywya, I'm going off on a tangent.  Since it's unusual for you not to have posted here by now, I hope everything is okay.  I'll check back later.  Maybe you're just taking one of your power naps.

Wendy

[MaryBKAriz]

Gooooooooo Debbi!
 
Mary

[Debbi]

Aaahhh - the new nurse (who's name is also Debbie, but with an "e") is terrific!!  What a night and day difference from the last one.  I really should have said something right away about "Lea" - now I realize how really incompetent she actually was.  Anyway, all of my blood work is waiting for FedEx pickup, and my dressing is freshly changed and looks like it is supposed to look.  Wahoo!  And, Debbie is set up to come next Weds so that next week's blood draw is on time.

Still getting some blood around the picc incision - Kay and Cheryl, if you're reading this, did you get a little ongoing bleeding at the site?

When I changed the dressing on my head this morning, I noticed a small amount of drainage again- which means that Dr. Louie's decisoin to keep my on the antibiotics was excellent. 

Wendy, could you send the sun out here to northwestern NJ?  It is still gloomy here and I could use a little sunshine!

Jan, what cool sounds are you hearing today?  I better go check your posts to see what is new in BAHA land...

Debbi - freshly swabbed and ready for the world...

[MaryBKAriz]

  Yea!!!! That sounds more like it. I am glad Debbie is good.

Mary

[wendysig]

Hi Debbi,
I wish I could send you some sunshine.  I'm sure you'll see plenty this weekend though, it sounds like we're in for a typical, hot summer weekend.  Glad to hear the new nurse is so efficient.  Does it feel funny when you call her by name?  I onlly know one other Wendy and she is only the third Wendy I've met in my llife.  It feels weird to call her by name.  Well here I am getting off the track.  Sorry to hear you still have some drainage, I guess that means your infection is still rearing its ugly head.  Hope the antibiotics know it dead sooner than later.  I forgot, how many more days do you have to go on them?  You sound like you're feeling better, so I hope you are.

Best wishes,
Wendy

[Tamara]

Hi Debbi,

  I hope you are un-picced soon.  I have been following your saga and thought I'd try to send a link.  I know it's too late for you, but maybe it will help someone else.  Your experience has prompted me to ask about presurgical antibiotic prophylaxis at my preop appointment on Tuesday.  Do you know if you had this regimen when you had your surgery?

http://drugtopics.modernmedicine.com/drugtopics/article/articleDetail.jsp?id=151434

Best wishes,
Tamara

[Anomar11]

Hi Debbi,

You really have had a long run of this.  You're in my prayers.

Mona

[wendysig]

Hi Debbi -
I'm on  early today because I'll be out most of the day.  Just wanted to check in and say hi and that I hope today is even better than yesterday.  Scratcjed a mosquito bite and now my hand is swollen so I'm off to the doctor to see if I need antibiotics.  Then hopefully we're going to the pool.

Chat laterand have a good day.

Wendy