Message from New York

Here is the entire message I received from New York yesterday:

"Dr. Bolognese will be reviewing the records, there is always hope. We will be in touch shortly"

I'm hanging onto that hope with both hands!

I got a message.

I received an email from the practice administrator profusely apologizing for letting Vanessa fall through the cracks.  He confirmed Vanessa's doctor had been changed and said there would be no charge  for the office visit the next time she's there.  I informed him since we have met our out-of-pocket cap for the year, there's no charge to us for an office visit so that is of no benefit.  I asked that he have the doctor look at Vanessa's records and make a determination in her care BEFORE we have to come up for another visit.  What a waste of every one's time, money and energy to fly up there and sit through the exact same appointment as she sat through in October.  I explained how difficult travel is on Vanessa and she hates to make unnecessary trips - and as far as we were concerned, this is trip would not be necessary - they have all of her records and if they want to see her in person - we have web cams. 

I sent that email 2 days ago.  I'm hoping the lack of an answer is because he has spoken to the doctor and he is studying Vanessa's records and will give a definitive answer before asking us to travel.  Keeping my fingers and toes crossed.

Start of a New Year

Called New York today.  Asked for a different doctor to be assigned since we have heard nothing from the current one.  The person (Karen - extremely nice) I was talking to pulled Vanessa's electronic records and said Dr. Insinga had not presented Vanessa's case to the 'doctor's committee' yet BECAUSE HE HAS NOT FINISHED HIS NOTES YET.  I explained that's why I wanted a different doctor - if he can't finish a note in 3 months, I really didn't want him operating on my daughter's brain. I told her the only way he was going to operate on my daughter's head was if I were standing there watching his every move.  I also asked that the practice administrator be informed and that he contact me to speak of this situation.  She (Karen - the extremely nice one) emailed me within 15 minutes and said she had spoken with the administrator and he would contact me tomorrow. . . going to charge phone now.

Heard from New York

Got a call (finally) from the doctor's nurse today.  Vanessa's doctor is currently in the clinic only one day per week.  He will not present Vanessa's case at the doctor's meeting this week because there will be NO meeting due to the holiday; however she will send him another email and he might contact us (snowball's chance in hell) via either email or phone.  I'm not holding my breath.  Will call again next week and request another doctor if nothing has developed by then. 

Hope one and all have a  wonderful Thanksgiving weekend and it's everything you've hoped for.

Still nothing

Still have not heard a word from New York.   I will be calling tomorrow and talking until I find someone that will talk back to me.  Waiting is taking a toll on us.

A very important question.

Laffy Taffy - how do you know when to swallow?

All is well

Vanessa is home and resting comfortably.  They said everything went well and from what the Dr can see, the nerve survived intact.  EXCELLENT news.  I know Vanessa was so worried about her face being numb.  He wasn't able to put her out, but tried very hard to make her 'loopy'.  Of course, things didn't work that way with Vanessa - she didn't get loopy til she got home.  She even admitted to being a bit loopy at supper.  She did eat supper, so that will help.  I think her relief at having it over is immense.  They have been telling her for years how bad these last 2 teeth will be to get out and she was pretty scared.  I'm glad this one is gone.  Wish the other one was out too, but the surgeon told her yesterday if it wasn't bothering her to leave it alone.  They will have to break her jaw to pull it.  Nothing is ever simple with her. 

She seems more bothered with the huge bruise on her hand where they unsuccessfully tried to get the IV drip started than with her mouth.  Course she can see her hand.  Hopefully she'll have a good night.  I'm hoping she will improve once this has healed.  I'm beginning to worry about her almost never leaving her room.  Oh well, that's another battle for another day.

Another day, another round. . .

Vanessa has to have oral surgery tomorrow.  While we were in NY, she had a wisdom tooth push through that they had been avoiding taking out because it has grown into the nerve of her face.  It pushed out and then broke off so she has to deal with it - took her this long to get an appointment with an oral surgeon.  She has the surgery tomorrow morning. He can't put her out completely (which he said he prefers to do) at his office because of her Chiari.  She would have to wait 2 more weeks to have it done at the surgery center.  She didn't think she could live through 2 more weeks of this pain, so she opted to have it done tomorrow.  She said he was going to take the tooth out in 2 pieces - hoping to do as little damage to the nerve as possible.  He told her to expect some permanent numbness in her lower lip area.  I'm just going to believe he's wrong and she's going to come through with flying colors.  This will be the first time I haven't been with her during a surgery. I have people out of the office tomorrow so I have to work.  Rick will be with her.  I must be more than a touch worried. . . chocolate doesn't even sound appealing.  Will update on her condition when I get updated.

Grrrrrrrrrr - A New York minute is not near as fast as I've heard it is.

Vanessa called yesterday to inquire about the neurosurgeons meeting and it's outcome.  Did NOT hear anything yesterday and have not heard anything today.  Guess we'll call again on Monday.  All this waiting has caused me to be just a touch perturbed - picture attached.

Waiting is not my favorite.

Well it's been 12 days out of the 14 of 'every 2 weeks' and we still haven't heard anything.  Don't know if that's a good sign or a bad sign.  Maybe they met today and we'll get a report tomorrow.  It sure is hard to appear as if all is well with your life while waiting on a decision that could completely change it's course. 

Started the paperwork for getting Vanessa's military ID card renewed today - it was amazingly easy!  I was very pleasantly surprised.  Now. . . . to talk her into going down to the local Social Security office and having a chat with them.  Guess I should be satisfied with one miracle at a time. 

Got Halloween candy at the commissary today. . . thereby making it easier for some members of society to survive.