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.