Debbi Bifulco Update

[Debbi]

Me again - still from bed 1164 at NYU...

The infectious disease doc (euw, couldn't they come up with a better title?) came in awhile ago - results from petri dish aren't really conclusive so he is going to continue using a broad spectrum antibiotic.  He'll consult w/Dr. Roland, but looks like I'll be discharged tomorrow with a PICC.  I believe they'll have a nurse come by several times to draw blood, then I'll see Dr. Louie (Infect. Disease) in a couple of weeks - which means more trips in and out of NYC ...

I'll confess to being a tad wigged out about the whole PICC thing, but Linda and Kay, you've already made me feel better.  It sounds like they're going to send me home with everything I need - but will know more later.  And, I know where to turn if I have questions!

Meanwhile, I did take advantage of my time here - I asked Dr. Roland if he could arrange for me to see a facial therapist!  The therapist came up this morning and gave me some simple exercises to do in front of a mirror every day - and he warned me that I might feel frustrated by my face's lack of cooperation especialy for the first few weeks.  Try as I might, I can't get any movement from my right eyebrow - but I am determined!  Anyway, seeing the therapist was a small victory that I needed this week - now I feel like i am still movinng forward rather than stuck in neutral.

I know that this whole infection thing is ging to slow down  my recovery a bit, but I still feel like I am doing well.  (Okay, I am trying to cheer myself up a bit here - I kinda hit the wall for awhile today.)

Thanks again for all the support - you are one more thing on my list of things to be grateful for!


Trish - hang in there and don't forget to breathe - I'm sending lots of good stuff your way!

Debbi - trying to wiggle an eyebrow in NYC...

[jerseygirl]

Debbi,

Say hello to Dr. Louie for me - he was my infectious disease specialist in 1988. Some things don't change! They did 3 spinal taps on me and Dr. Louie did the culture in the petrie dish! I remember him very well but he probably does not remeber me. It was about the same time and he had terrible allergies. He gave me culture results while sneezing, blowing his nose and coughing!

It is a good thing you are going home. There is just no place like it and you will be much more comfortable! Hope there will be no more infection for you! Best wishes always,

                      Eve

[yardtick]

Debbi,

You realize Dr Louie is my husband's nick name , so it can't be him because we live in Ontario.

Anne Marie

[MaryBKAriz]

Hi Debbi,

I am glad you will be able to head home soon. I hope it is all much easier with nice steps forward. It is good to hear the facial therapist has started working with you. That is going forward and something to hang your hat (or should I say eyebrow) on!.

Take care,

Mary

[lori67]

Debbi -

When we suggested some gardening, we didn't mean to try growing something in a petrie dish!! Unless of course, you're trying to make your own penicillin.

Hope you're able to sleep in your own bed soon!  Get outta the hospital - there are too many sick people there! 

Lori

[wendysig]

Hi Debbi -

It's great that you'll probably be going home tomorrow!  I'm sure this has been an ordeal you could have lived without.  It's great you still have such a positive attitude.  Just goes to show, you can't keep a good woman down. The news about the facial therapist is fantastic.  Before you know it, you'lll be symmetrical again --YAY!!! (well maybe not before you know it, more like after a lot of hard work, but it'll be worth it).  Still keeping all my fingers and toes crossed for you.

Best wishes
Wendy

[leapyrtwins]

Debbi -

it's good to hear that you managed to dodge the surgery bullet   I'm sure you are relieved; I am too!

The therapist sounds like an added bonus - something good came out of this second hospitalization after all.

Hope you are able to go home soon.

Jan

[Catflower]

Hi Debbi:  The PICC line is a piece of cake.  No more painful than blood draws.  I had a home health nurse who came to my house on a regular basis.  The agency also had on-call people 24/7 in case I needed anything of had any questions.  The nurse came the same day I came home and taught my husband and I how to set up everything.  It was a little overwhelming at first, but everything will fall into place quickly and you'll get into your own routine.  The blood work is necessary to make sure the antibiotics aren't depleting your white blood cells and to make sure the antibiotics are at a therapeutic level.

I was on vancomycin, rocephrine and flagyl (spelling is probably wrong).  Like I stated before the Flagyl made me quite nauseous the first 48 hours, but went away.  It also made the metallic taste in my mouth worse.

If you have any questions please feel free to ask.

Good luck
Linda in WV

[Mama R]

You've been through a lot, Debdi. I am generally a positive person too, but I've found sometimes I just "Have To Hit The Wall"..as I am only human. Allow it and it will soon cease. Thoughts & Prayers coming your way....

[leapyrtwins]

Knock, knock.

Hey, Debbi, are you home yet 

Hope so,

Jan

[Debbi]

Hi All-

I'm here - home, that is!  Yesterday was a VERY long day - had my first IV of the day at the hospital - the vein in that arm was just about shot, so it was long and fairly uncomfortable. 

While that IV was still dripping, the "limo" guy showed up with a bed to take me to radiology to get the PICC line installed.  I must say that it was quite unpleasant - probably because I really didn't know what to expect.  They just used some lidocaine to numb things up (which, IMO, doesn't really work well).  Mid-way through, I got really anxious and the next thing I knew, I was crying!  I was so embarrassed.  There I was, laying there with a thing in my arm, with my left eye crying for all it was worth.    I think it was just an accumulation of everything - I haven't cryed at all since my surgery.

Anyway, I had sort of regained my composure - until they wheeled me back to my room and I saw Willie - then I lost it all over again.  At least I wasn't sobbing and blowing boogers  .  However, I know for sure that my right eye doesn't produce any tears at all - and my left eye seems to be able to make up the difference! 

They kept me at the hospital to run the second drip at 4 pm - so we finally pulled out of the hospital parking lot at 7 PM last night!!  Yay!!!

This morning, the VN came over to go through the IV thing with us - you're right Linda, it is really pretty simple.  All of the supplies were delivered yesterday, so we have everything we need.  Willie and I (with Mom and Dad witnessing) did the IV tonight without any glitches.  I've got these really cool IV things that kind of look like lemons - or hand grenades.  They come wiht a line attached that I attach to the PICC and then it just drips out over about 60-90 minutes - no IV pole, or regulator or anything.  The nurse had never seen one like it before, but loved it.  I have a little fany pack so that I can walk around with it.  I'll try to get a picture tomorrow.

Okay, so this is defintiely a little setback, but hopefully these anti-biotics will do the trick.  Dr. Louie said that we won't know for sure if it worked until I go off them, which should be in about 2 weeks.  Sigh.

However, in the scope of GOOD news - yesterday as I was practicing trying to move my face in the mirror at the hospital, I got a little twitch below my right eye, on my upper cheek.  I was so amazed that I tried it several times before yelling out to Willie to LOOK AT THIS!!  yep, I have the first tiny little bit of movement - and I can control it!  Dr. Roland said that the mid part of my face (cheek area) would be the first to regain movement, so this seems to be consistent.)  I was so excited!  I still can't move anything else, but, damn, am I proud of my little twitch! 

I slept most of the day today - but plan to be up and about more tomorrow.  A friend of mine is coming up from the Princeton area (about 2 hours) to visit tomorrow.  She hasn't seen me since I was in the hospital, so am anxious to see if she can see chamges.

Meanwhile, a question for the other PICC folks - my arm where they put the PICC in is still VERY sore today - sore to movement, and sore to touch.  Did you also experience this?  It is a bit better today, so I expect it will be even better tomorrow, but it is still a bit un-nerving.

Hope everyone has a great weekend - I'll be back tomorrow!

Debbi .. PICCing in NJ...

[Catflower]

Debbi:  Glad to hear you are home.  I'm sorry your PICC line insertion was so traumatic.  My PICC site was sore for about 3 days.  They told me to use ice packs.  Your IV hookup sounds great.  I was stuck in one place till all of my antibiotics ran which took about 90 minutes.

Linda in WV

[sgerrard]

It's home sweet home, even with a PICC. I had to Google to find out what that is; now I know more about it that I need to. In a word, ouch.

As the song says, keep your eyes on the prize. You and Willie will get there. You are going through some stuff right now, so be sure to take it gently. Dream of those wines and cheeses and hams you were discussing with Lorenzo; those days will be back.

Best wishes for a smooth recovery from here on out.

Steve

[leapyrtwins]

Debbi -

I'm glad to see you are home again    and sorry to hear about your hospital experience 

Hopefully it's all water under the bridge now.  The IV "lemon" thing sounds great, especially with the mobility it provides.  I had to have IVs of gamma globulin when I was pregnant with my twins to prevent miscarriage (long story, there) and it was a real drag having to basically sit in a chair with an IV pole for roughly 2 hours 3x a week for a couple of months.  I'd love to see the lemon/hand grenade picture if you don't mind sharing it.  You are such a trooper 

The facial movement is a wonderful milestone; very exciting!

Have a great day with your friend from Princeton,

Jan

[Cheryl R]

Debbi,   I am sorry to hear of your having to go thru all of this.             I had a CSF leak 2 weeks after my surgery in 2006 and it was very discouraging to have to go back and end up with more surgery in my case.          Things will improve in time so hang in there.            Having  PICC is better than having to be stuck numerous times which happens to me.     I mentioned a PICC but they did not want to do one.                   Just curious but do they ask people who have them at home to measure the uppper arm on a routine basis.     We did at where I worked every shift but since I was never around anyone who has one at home was jusr curious.           I am not surprised at some soreness at the place where it was inserted but do know to let someone know if you have pain in the upper arm or chest.           
                                                          Cheryl R