Tuesday, September 27, 2011

No Time ...arghhh

I really can't wait to get to this blog, but alas- meetings with principals, Fall Festival planning, Katie's Dance Class followed by Katie's 2 hours of dreaded Volleyball this evening are hampering my efforts!!!

But don't you worry, blog world.. the rant of all mega rants is on its way. Hold on to your mouses...or mice.. or mices...heh

I think I might stsrt a new blog, btw... Keep this one Chiari focused and the other just Jen's goin' off focused. Wudya think? What shall I name it?

Monday, May 31, 2010

Back home and doing really well...Almost painfree. Michael's biggest complaint is dizziness with occasional nausea, but it's nothing compared to last week.

Monday, May 24, 2010

Monday- Day 76googazillion

Michael had a CT scan that showed he has some intracranial pressure and swelling. He's being treated with Mannitol- which is some scary $&^*. He's tolerating it well though so the laundry list of potential wicked side effects is shortening with each dose, thank God.
He's also being treated for meningitis- caused by the surgery (not the infectious type). He's on Decadron- which he's also beginning to tolerate better than he had been.
He's still just laying down moaning, with no interest in sitting up or eating. He gets severe nausea as soon as he sits up. Hopefully these treatments will help with that, but it's got Michael too afraid to even try now.

I'm also worried because he's been very bradycardic- his heart rate has been in the 40s for 2+ days now. Drs say it's from the brainstem manipulation and will improve with the Decadrom treatment.

Hopefully as the day goes on he'll perk up. Dr. Bolognese should be in soon. I will post his wisdom later.
Follow up CT Scan tomorrow.

Sunday, May 23, 2010

Sunday - Day 3

Mike hasn't been feeling well. I tried updating the blog yesterday via my phone app, but it somehow broke the blog post into 10 small posts rather than one large post. Its never done that before and I didn't have the time, nor the patience to fix it, so I just deleted yesterday's update.

Michael cannot eat or drink without nausea and vomiting. His pain is better controlled, but the nausea is awful. He cannot sit upright without vomiting either so the thought now is that he has either aseptic meningitis or "chemical" meningitis. Dr.Bolognese was in this morning to explain what chemical meningitis is, but to be honest...I need to go look it up in english.
Regardless- the treatment is Decadron, which he's on.
It's also possible that he's just very low on CSF because of the surgery, and his body isn't replacing it as quickly as normal because he had been on Diamox for so long.

Dr. Bolognese has increased the Decadron and fluids. Hopefully this will do the trick soon. Mike is miserable. :(

Friday, May 21, 2010

First Morning post-op

stood up
turned head
turned head again
Dr.B left
went to sleep
went to sleep

it's only 11


Changed anti-emetics and pain meds.
Lets see if the new cocktails will do the trick

It's all over :)

So this is the 3rd time I'm attempting to post this update! The hospital's server boots you offline if you're "idle" after a few minutes. It doesn't seem to sense the typing going on!
I've finally learned my lesson.... notepad/copy/paste ;)

okay... So Mike went into the OR around 9:30, he didn't get to the PACU until almost 7pm. It was a very, very long and complicated surgery. Dr. Bolognese was very pleased with the outcome. He was able to preserve C1, which is what we all wanted to maintain Michael's cervico-cranial stability. Dr. Bolognese worked in such a small window so that Michael may avoid cervico-cranial fusion...which would have been awful for him.
I'm so grateful he was able to successfully do this.

Dr.Bolognese said Mike had a lot of adhesions below the cerebellar tonsils which were also difficult to get to, but they're all gone now :)
His tonsils were well below C1.

Dr.B came out to see us at 6:45 to let us know that Mike did very well and that they were just closing him up.... It was the biggest weight off my shoulders EVER...I finally got to stop crying :)

They called us to see him around 7:30(?) in the PACU...He was very nauseated, but he looked well. He was very sleepy. He had 2 nurses- one we liked, one...not so much. She changed her tune after she realized we are healthcare professionals. Her original plan was to make Mike wait for his PCA pump because she didn't feel like doing the paper work for the other nurse. That plan was very short lived :) No one makes my son sit in pain because they're lazy.
Her tune changed VERY fast....and Michael got relief.

He was transferred up to PICU around 9 or 9:30. He's in the same room he was in for his last surgery...and the same room Grace was in for her decompression- so it's beginning to feel like "our room". He was doing very well until the nausea/vomiting kicked in. We've been dealing with that on/off all night.

Thursday, May 20, 2010

Duraplasty started at 3:20



Sitting in a waiting room full of dozens of people- all with a story of their own.
I'm the only dummy sitting here crying like a baby :(
Mike in OR ... surgery will begin close to 11... Expected to end around 5-6pm. Dr. Bolognese doing a smaller laminectomy than usual to maintain the integrity of Michaels cervicocranial junction due to his retroflexed odontoid. Smaller laminecomy means smaller visual field, which means longer, more complicated surgery... So it could be even longer than expected. Adhesions and vertebral artery position will also factor in on surgery time.
I will post updates if I get any.
Please pray.

Wednesday, May 19, 2010


We're just sitting in the playroom at TCI waiting for Dr.Bolognese.
We were lucky enough to get accepted at the Ronald McDonald House of Long Island; so that will be homebase during Michael's stay in the hospital. The girls will like it there. It's full of playrooms and kid friendly stuff. One of us will be with Michael at all times.
I'll get details from Dr.B on ICU/Peds stay time after our visit this evening and post them later. If I remember correctly with Grace... it was 3 days in ICU....and 2 days in pediatrics.


Monday, May 17, 2010


Consensus was to go ahead with surgery. His pain is ridiculous.
Michael is scheduled for posterios fossa decompression on ...

Thursday May 20th
North Shore University Hospital Manhasset (not LIJ)
@ 9:30am.

CT today, pre-surgical testing tomorrow, meeting with Dr. Bolognese et al on Wednesday.

Will post all updates as they happen just for the sake of keeping myself busy.

Just for a little vent...
Gotta love NYS... My boss refused to allow me to use paid time off for my son's BRAIN SURGERY because the state is in a fiscal crisis and she refuses to pay for me to be off and also pay someone else to be there. Regardless of the fact that the person willing to cover me is part time and it would have been at straight-pay.  I only asked for 2 days off. Ironically, the very day I asked for the time off, I was  at work on a scheduled shift beyond what I'm required to work. There was no need for me to stay and we were over-staffed. I asked to go home and they refused- simply because they knew I wanted to leave. So they kept me to be control-freakinsh in spite of the budget, but won't allow me to use time off that I've already earned (that they're eventually going to have to pay me anyway). Now here's the kicker.... I now have to call in sick (family sick time)- for which they will reserve (and likely use) the right to write me up for..... and they'll STILL have to pay ME and someone else to be there!!
My immediate boss, nor my nurse manager never even bothered to say so much as ..... 'Gee Jen..sorry to hear about your little boy'. NOTHING. Not an ounce of compassion. As if the kid were going to the damned dentist.

I hope they reads this. Witches
I'm probably going to end up fired anyway :/

Friday, May 7, 2010

The TCI Surgical Committee...
Meeting on Monday to review Michael's case. His pain has been relentless. Enough is enough :(

Sunday, May 2, 2010

Young woman shares her story for 'House' TV show

The Bellingham Herald / Top Stories / Bellingham woman shares her rare brain disorder for 'House' TV show
Monday May 3, 2010 8:00 PM - 10:00 PM
Chiari Malformation will be featured on "House" this evening! Please share this information with your family, friends, and collegues!

This is a big deal for awareness. Please watch.
It also happens to be my favorite tv show. I'm looking forward to this.

Tuesday, April 27, 2010


......is what the headline reads-
off the CALIFORNIA AP newswire

Helloooo... where are are you Heidi Evans? Isn't the NY Daily Rag interested?
Let's take a look-see at what it says...

FRANK ELTMAN, Associated Press Writer
― An expert on a rare form of brain surgery is backing a Long Island hospital under scrutiny after two of its top physicians were suspended for leaving a patient on the operating table, the hospital said Tuesday.

In a review commissioned by North Shore/Long Island Jewish Health Systems, UCLA neurosurgeon James Ausman called the Long Island hospital's Chiari Institute 'the finest center of its kind in the world.' A spokesman for North Shore, which released Ausman's review, declined to say how much the neurosurgeon was paid.

The institute draws patients worldwide who have a rare congenital brain defect called Chiari malformations, which can cause headaches, dizziness and other pain. Ausman cited the institute's experience and results with Chiari malformations, calling it 'a model for the care and treatment of any disease entity.'"


I can't wait to read what Ms. Evans will have to say about this. Surely this is important to her.

On another note:
Michael (now 13) needs decompression surgery soon. He's been out of school (being tutored) for 2 months with severe pain and dizziness. Surgery was recommended, but the extent and urgency are being determined with further testing that he's now undergoing, as Mike's chiari malforation is further complicated by a retroflexed odontoid.
He's having a swallow study, 24 hr. cardiac holter montoring and sleep study.
I will post the results as they come in.


Tuesday, September 29, 2009


It really sucks when you lose or question you faith in your physicians. These past few months of witchhunting by Ms. Evans of the NY Daily News has caused many patients at TCI to wonder who to trust.

So here I sit with 5 MRIs and an LP for myself-
4 for Katie
5 for Michael
5 for Grace
~Myriads of concerns, from leaking CSF via nose/eyes, monster headaches, chronic nausea, dizzy spells, migrating pain, tingling, numbness, cognitive dysfunction, serious short-term memory lapse.... ...most of you already know the never-ending list

Bring it all back to TCI?? Maybe they're the best place to be right now?? Surely they're on their toes??
We feel so lost.

One thing I do know is this...
I trust my surgeons over the PRESS a millions times over. As an avid reader of the news and follower of politics, I know the destructive and manipulative power the press holds.
I would bet my last dollar that Heidi Evans has an agenda way beyond her journalist interest in this case. I don't know what it is, but I have faith it will be exposed.

Do you not find it odd that only Milhorat/Bolognese's names have been defamed? Who was "ortho surgeon" "#3"? Who were the anesthesiologists?? Where are their suspensions?

I will go next week to TCI and try to embrace the confidence I once had. ....and I will continue to walk past every issue of the NY Daily News and laugh at their pathetic state of desperation.

Thursday, May 14, 2009

Dr. Bolognese has been reinstated

Dear NY Daily News,
Bite me

Dear Heidi Evans,
You are the most pathetic excuse for a "journalist" as I've ever known. You are the epitome of biased spin. I DARE you to interview me. I will give you at least 50 Milhorat/Bolognese supporters for every whiner you can drum up. Up to the challenge??
Is Bolognese's vindication on the front page of your rag today? I bet not.
To hell with you and what you did to the Chiari community.
Karma sucks, you bottom feeder.

Jennifer Kelly

Monday, May 11, 2009

Milhorat gone- Where does this leave us?

Surely anyone who has found their way to my blog has already heard that Dr. Thomas Milhorat has retired after outrageous claims and a susbsequent suspension of his license.
I refuse to post the articles, because I won't give that rag (The Daily News) an ounce of legitimacy.
I'm writing here now because I'm saddened that this topic has been placed "off topic" (not allowed to be discussed or mentioned) at most leading Chiari Support sites.
I can understand not wanting to pass misinformation during a time when the full picture has yet to be seen or known.... However, I know that many of us are looking to bounce ideas off one another.. We're looking for support and to share our concerns.
Regardless of what comes out this week about Dr.Bolognese, one this is sure- The Chiari Institute as we know it is in dire straits. Without Milhorat, many of us are left not knowing the fate of who will ever perform future surgeries.
Dr. Milhorat is the lead surgeon. Dr. Bolognese is the intraoperative doppler guy. While Dr.Bolognese is brilliant, I'm not so sure he'll be enough. He's like the jelly without the peanut butter.
Many of us (or our family members) are awaiting surgeries. Now what!?
Will TCI remain open? Who else is there? I've always hung my hat at TCI's door. I know the names of many other Chiari experts (Oro, Benzel, Frim, Menezes etc..) but which of them are the best? Which of them had faith and support for TCI docs?

I've made my opinion clear to many about the April 10th incident to many...and I've been vocal about it at the Newspaper's comments sections. I don't want to rehash it here if I don't have to.
I have respect for both of these men, while I have no respect for the press. There is much more to this story and I doubt the truth will ever be told in the Daily News print. North Shore University Hospital also has a lot to lose by allowing the real story to leak. At the very least, NSUH was (and has been) complicit in allowing Universal Safety Protocols to be ignored for the sake of expediency($$$). There is absolutely NO EXCUSE for placing a patient under general anesthesia without the surgeon at the very least scrubbing.

Obviously much more is to be revealed, but I felt that it's impotant to have a place where people are free to post their thoughts and fears without being told it's "off topic"... because we're all left high & dry at the moment. We're used to being left high & dry by ignorant dismissive doctors who know nothing about chiari, but dismissal by our very own support base is inexcusable.

Don't ignore the elephant in the waiting room.

Friday, February 6, 2009


So here's my rant.... My eyelid is all droopy like I've had a stroke. I have no idea why, but I hear it's my norm.

Michael and Gracie see the surgeons and neurologists at TCI on Monday to review their most recent MRIs. I'm afraid of what they'll say about Gracie because she's had a lot of neck pain recently, coupled with feeling like she can't hold her head up. I refuse to allow her to have cervico-cranial fusion unless it's life or death. I have a feeling that's what they're going to suggest. She's been complaining about swallowing difficulty, severe headaches, nausea and dizziness.
I pray they give me good news.

Monday, January 12, 2009


Well... it's beena long time since I've posted. Too long..
A combination of election sulking, starting a new job with more/longer hours, feeling like crap, kids feeling like crap, crazy holidays and a long month of Internet interruptions (Cablevision sucks)- I haven't found or made the time to post.

I hope 2009 offers better things.

Good news/ bad news
So Gracie has been having a tremendous amount of pain lately. It's mainly been at night, but it does happen during the day too. The pain seems to be mainly in the area of her left temple. Nothing seems to help. We've tried Motrin, Tylenol, Oxycodone and Valium- None of them do anything to help. She cries almost every night for hours before bed and it breaks my heart.
The good news is that she had MRIs of her head and neck this past week and as far as I can tell her syringes are almost GONE... Okay, well they're not gone-gone but they look a hell of a lot better than a year ago.
This was a year ago (Jan 2008)
This is now- 5 months post decompression.

While the good news is that I am thrilled the decompression surgery seemingly helped the syringomyelia..
The bad news is, I have no idea why she's still in so much pain. She has continued night incontinence and a lot of nausea.

We see the Chiari Institute docs in February