Debbi Bifulco Update

[cmp]

Congrats on the great prognosis for your facial recovery, Debbi! that's really wonderful news...

Everything crossable here is crossed (fingers, toes, eyes), hoping that after tomorrow your ickyhead days will all be behind you. Good luck!

Carrie

[wendysig]

Hi Debbi -

I like your idea about an AN starter kit.  I t sounds like you, Jan and Lori might have a winner there.  Too bad about the sushi though.  I'm not a fan but you obviously miss it.  Maybe you can get take-out!  Glad to hear that your doc was happy with your progress and feels that your facial nerve function is returning.  I wouldn't worry too much about an asymmetrical smile, I'm sure it will just add a charming character to your face.  Probably no one but those who know you best will even notice it.  Good luck tomorrow with Dr. Louie.  I'm crossing everything that will cross for you, fingerrs, toes, shoelaces!  Great news about your MRI in September too.  I find one of the things that stresses  me out the most, and this is probably true of everyone, is waiting to find out  what the results of  tests  are.  The fact that you'll find out that day is great news!!


Jan -Thanks for yoru reply.  I was pretty sure  you and Lori were half joking and half serious but had to ask.  Humor is the best  way, in my opinion, to deal with something like thiis.  You have to be serious enough of the time, and I couldn't agree more with Kay that you can laugh or crumble in a pile and cry.  I've done my share of crying over this thing, and I'm sure I'll do more, but I'd much rather look for the humorus side of things.  It just makes everything seem a lot better than it would otherwise.  Regardijg balance issues, I'm hoping not to have too many, especially since my doctor said he expects me to have about 60% less of a problem than he originally did.  Not too shabby!  Today was a busy day as my niece came over with her little boy.  He's htree years old and just adorable.  They stayed until about 4:00 so my daughters got to play with him when they got home from school.

Kay -  Thanks for the advice about laughing at myself.  It is one of my favorite things to do lately.  Good thing my audience (me) thinks I'm funny! It makes me feel a lot better than crying would, although sometimes a good cry seems appropriate too.  This is a scary experience, but you are right about a great support group.  The people here are just great!

[yardtick]

Debbi,

Every time I see Dr Louie in your postings I think you are talking about my husband LOL!!  That's his nickname and that's part of our email address.

By the way, I so glad you are getting better.

Anne Marie

[Debbi]

Hi Ho, Hi Ho, it's off to Dr. Louie I go (not your Dr. Louie, Anne Marie!)

My appt is @ 2:30 this afternoon and I am filled with anxiety and excitement.  I am SO hoping to see an end to the IVs - not that they are difficult, but because ther represent a barrier to my recovery -- not to mention that the antibiotics are making me wickedly tired.  Having a port hanging out of my arm is a constant reminder that I am not "well" yet - I'm sure you all understand what I mean by this?  Intellectually, I know I am doing very well, but seeing that damned (sorry Moderators - there just isn't a better word!) port sitting there like a malevolent little troll  is just crummy. 

Meanwhile, thanks to Wendy, Jan and everyone else for the good humor - you all rock!

Okay, enough of my whining.  Based on the great big scab on my head, and the fact that there has been NO drainage for the last two days, I am nothing but optimistic.  I will update tonight when I get home.

Meanwhile, has anyone heard anything from Fabian?  How's our girl doing?

Debbi

[Kaybo]

Debbi~
I can certainly empathize about the PICC & the antibiotics!  Good Luck today at your appointment!

K

[Captain Deb]

Hey Debbi--hope that your doc un-PICCs you today! Just tell him you need to go to the beach and it don't match your bikini!!!

Hugs,

Capt Deb

[wendysig]

Hi Debbi-

Good luck today!  I hope Dr. Louie has nothing but good news for you.  I'm sure getting rid of the PICC will be like getting rid of a ball and chain, so I hope you get to doss it over the side, metaphorically speaking.  I'm sure getting off the antibiotics will be something to celebrate too.  All fingers, toes and shoelaces are still crossed for you (I never could cross my eyes).  I'll check back later to see how things went.  As I told Jan a few minutes ago,  I miixed up my doctor appointments on the calendar.  I through I had an appointment with the opthamologist today (I have high pressure in my eyes so I have to be screened every few months and make sure I don't have glacoma (spelling?).  A little voice in my head made me call the doctors' offices today to make sure whiich appointment was today and it turned out it was the audiogram, which I had this morning.  Now I'm waiting to hear from Dr. Choe and see what he has to say.  The audiogram showed even more of a decrease in hearing than the one two weeks ago, so the news was not good.  I thought this might happen, so at least I wasn't surprised.  Hopefully, I will get good news from the opthamologist tomorrow.  I'm pretty sure everything is  the same as far as that goes.  I'm just falling apart (not really).  I have to say that I am grateful to be off that darn prednisone.  It really made me feel like I was losing my mind.

Wendy

[Jim Scott]

Debbi:

Just popping in to add my wishes for some positive news from 'Doctor Louie'.  I fully understand the frustration of having anything -  even something as necessary as the PICC line - that reminds you you're not totally well.  I'm pretty sure you'll be free of it by the time you read this, so you'll be able to resume your full-speed-ahead quest toward a full and complete recovery. 

Jim

[leapyrtwins]

Debbi -

am anxious to hear what Dr. Louie said.  Are you PiCC-less yet?

Jan

[Debbi]

Hi All-

Well, we got stuck in NY rush hour traffic leaving the city , so only got home a short while ago (stopping to grab a veggie pizza to bring home - can't eat THAT in public!)

So, Dr. L said that because some of my blood levels are elevated, and because I was still having a small amount of drainage up until a few days ago ... I have to stay on the antibiotics at least another 10 days.  Rats.  Double rats.  However, he reminded me that if I stop too early and the infection comes back, the only option will be surgery and a 3rd hospitalization.  Okay, I want to avoid THAT at all costs, so the PICC line stays in for now.  I'm a bit disappointed, but nothing to do but stay the course.  Guess the plastic wrap and packing tape stay next to the shower for a bit longer.

Question for the PICC folks - did anyone come up with a better way to keep the line totally dry during showers?  I feel like a freakish version of the "mummy" when I shower...

I requested a different HHC nurse because the one who has been coming has unnerved me a bit.  She always seems uncertain.  She got something stuck in my IV line the last time she drew blood; and the dressing she put on my picc site was done wrong (Dr. Louie was very displeased when he saw it.)  So, I sucked it up, and told the company that I wasn't pleased with the nurse.  Someone is coming over tomorow morning at 7:30 AM to draw blood and change the dressing - let's hope for a good one!

Tomorrow is another day - my big adventrue tomorrow is the facial therapist.  I'll post late morning with an update.  In the meantime, I remain...

Debbi - still PICCed ion NJ...   

[leapyrtwins]

Debbi -

sorry to hear you're still PICCed, but what Dr. Louie is suggesting makes perfect sense to me.  Ten days of drugs instead of a third hospitalization is a no brainer.  On the bright side, you are definitely moving in the right direction and the ten days should go quickly.  Hang tough 

I can't even imagine the mummy shower preparations - I'm thinking Lori should come up with an easier remedy - afterall she's our key to financial happiness and great wealth    I thought it was awkward to hold a plastic cup over my BAHA site for a week and I lived in fear of water creeping under the edge of the cup.  I can laugh about it now, but at the time it wasn't very amusing.  Hopefully one day soon you can laugh over the mummy wrap 

IMO the decision to switch nurses is a great one.  I love nurses - I work with some - but it sounds like this one is brutal.  I know from being a blood donor that not everyone is good with a needle 

Best of luck with the facial therapist; let us know how the adventure goes.

Jan

[lori67]

Unfortunately, I think the mummy shower wrap is probably the best you're going to do.  When I had my BAHA surgery, they gave me some waterproof things - they looked like heavy duty saran wrap with sticky stuff around the edges.  We used to call the smaller versions of it Tegaderm, which we used in the hospital to cover over IV's that weren't being used at the moment - kept them dry and in tact.  I don't know what the brand name is for the bigger ones, but mention it to the home health nurse and they may have something you can use.  Or you can even ask at your pharmacy.

I've usually resorted to being MacGyver to keep things dry - plastic wrap, zip lock bags,  whatever I could find.

Good luck with the therapist.  I'm still working on our get rich quick plan....
Lori

[wendysig]

Hi Debbi -
I've been wondering where you were.  Sorry you're still PICC'd, but as you and everyone else has  said better this than yet a third stay in the hospital.  I hope the next ten days fly by for you and your new nurse is better at what she does.  Nurses do rock.  One of my neighbors is a nurse and she ihas been a real angel and a good friend to me when I've needed her.  Of coruse, one hand washes the other too.  Good luck tomorrow too.  Had my hearing test today, but I'll fill you in on that another time.  Hang lin there and keep on smiling.  Your positive attitide and humor will see  you through this too.   

Wendy

[Kaybo]

Debbi~
One of my nurses suggested using the wrap stuff that is kind of plasticy-foamy that stretches and adheres to itself (it comes in all colors and they wrap you arm with it when they draw blood and then the wider is flesh-tan color) to wrap up the danglly thingies during the day and then also to use under wrap in shower - then you don't have to be SOO careful withthe wrap.  Also. the HHC nursed I used always came in w/ a little trash bag to use each time -- she figured that those little bags all folded (or from roll) were just exactly the right sizr to cover so then I just taped that!  They suggested an old bread sack or newspaper wrapper but I thought the other worked better.

Good move with the nurse -- thank goodness mine were all great!

Hope some of that makes sense...

K

[MaryBKAriz]

Hi Debbi,

I am sorry you have to keep the PICC. I do agree it is better than a hospital stay. Like you said, RATS! I am cheering you on and hope the time flies and your next blood test is so good he frames the results!

Take care,

Mary