Guy Lunardi's blog

Breathing test - July 6th - Tori over achieved

Of course we can all understand that Tim is pretty tired at this point. Between looking after Tori and taking Brendan to the pool, it would exhaust anyone!

Tori today over achieved and it should not go un-mentioned.

In the early afternoon, the respiratory team decided to test Tori's ability to breath through her Trach on her own. They basically standby the respirator and place a 'humidificator' over her Trach. They wanted to observe how she would do for a period of 60 minutes. Maria and Tim said that several were skeptical she would last the whole hour.

I didn't get to the hospital until probably 4:45pm tonight and guess what? The clock on the respirator read 3h30 standby time.
She went on and stayed for 4 hours and 4 minutes without the respirator's assistance!

Tori, please continue to find the strength in yourself to heal.

Tim, Maria, you guys are awesome and we could not wish for better parents for Tori, Whitney and Brendan right now.

Tuesday, July 5th - Day 16 update (10pm)

Tim will be posting his update for the day very soon - un-promoting from top of the list.

Update at 10:00pm: Tori is back in her room. The operation seems to have went well.
I am pleased to say that you can again see her beautiful angel face without tubes or tape. What a sight!

She grimaced again tonight while we were in there. It is hard to see her facial expressions like that. We would much rather see her smile of course. That will come in due time. For now, she needs all the support and prayers you can give her. Strength and will, Strength and will.

Update at 6:55pm: They just took Tori in to perform the operation. Good luck sweetheart! Hang in there, it will be over soon and you will be done with that tube in your mouth.

Update at 4pm: Maria and Tim talked to the surgeon and anesthetist again this afternoon. They are only doing localized anesthesia. They feel it doesn't present any danger and therefore are going to do the Trach surgery today at 5:30pm.

Tim wanted all of you to be updated on how Tori's day is playing out.

The surgeon and anesthetist met with Tim and Maria in the morning. They decided to proceed with the surgery (G-Tube and Trach).

Tori was prepared and moved to the Operation Room (OR) around 10:00am. Tim and Maria stepped out of the hospital to place a few phone calls (probably 10-15 minutes). When they stepped back into the lobby, it was pitch black - NO Light - NO Power. They were re-assured that the ORs had un-interrupted power.

A few minutes later, Tori was moved back to the Pediatrics Intensive Care Unit (PICU). The surgeon told Maria and Tim that Tori received a G-Tube successfully but the power outage prevented them from being able to do the Trach.

She is still under anesthesia and will be for a few more hours. Because the second surgery didn't happen, she is going to need to go under anesthesia again. They are not sure when.

The Dance Club:: Tori's book

Tori's friends spent a lot of time creating a book for themselves and Tori. It was a shame that it was only available for those able to visit the hospital and now the Schmanski's house (well right now it is sitting on my desk).

I took the liberty to unbind the book and scanned every pages of it. It is available at The Dance Club:: Tori's book.

The most difficult part in this, after reading every single page of course, is going to be putting the book back together with knots as nice as before.

A WORD OF CAUTION: The book was authored by the girls with the understanding that Tori's chances of survival were very slim. The content is very moving.

Random quote:
...Tori you are just so amazing. You are just the cutest girl ever! I love how you are just always yourself!...

Some serious hair...

Today's nurse was concerned that Tori was getting quite warm. We were told that 30% to 40% of the body heat is released through the head. At one point, she figured that Tori was sweating and decided to undo her braided hair.

Maria and Tim tried for a while to straigthen it back and spread it accross the pillow so she could cool off a little bit. Well, let me tell you, that was a lot of hair! Tori would have been mortified if she had been awake to see her hair like that. Maria washed her hair.

Tori brought a lot of warmth to my heart today. While she was quiet and mostly asleep today, she did wake up for a few minutes. She was really alert and was starring for long seconds. I could tell she was trying to communicate something to us. Seeing her alert re-juiced my convictions. A lot of it is perception of course, but no one can take away how much we believe in her!

Is it really 3:02am?

It seems like it is 3:02am here according to all the time keeping devices I can find. Here is one I especially like if you need to know what time it is everywhere in the world:

This is quite likely to be a very short entry as I am supposed to be attending a meeting in 4 hours. Didn't get a chance to see my lovely wife tonight. This reminds me how much we do not tell enough the people we love how much we enjoy their company.

I had a chance to chat with Tori's very dear friend Nicole today online and it helped me better understand why she would always want to spend time with her friends and not us. It's quite simple: They are more FUN!

You are all going to make a big splash in New York! Dance for Tori like you did today and you are guaranteed to win.

The Dance Club Company Showcase - Thursday, June 30th

Tonight Maria and I went to the Dance Club Company Showcase which is esentially a publically accessable dance recital put on by Tori and Whitney's dance club. The dance teams performed 52 dances which will all be done at the NYC Dance Alliance during July 1st through 10th. Whitney will also be going on the trip and we have enlisted many of the 'dancing moms' to watch over her :-) She will be in great hands!!

There was a sign at the auditorium entrance which was titled "Tori Schmanski - our inspiration" and it contained many pictures of Tori which we hadn't seen before. Maria and I liked it very much and the emotional stage for us tonight was immediately set...

Dinner and a show

Tim called around 11am this morning to tell me how excited of a morning Tori gave him. He said that she was very alert and responsive to his stimulation. This is of course very encouraging and we all hope she continues to show signs of progress.

Sophie and I were fortunate to make it to the hospital tonight and see her for a few minutes. I am quite convinved that Tim wore Tori out today because she appeared tired but peaceful.

From 7pm to 8pm while Tori is unavailable due to Nurse shift change, six of us went to dinner at Bangkok Thai tonight. It was quite good. Everyone one of us enjoyed their meal. I recommend the Honey Ginger Duck.

I wanted to take this opportunity to acknowledge Tori's nurse tonight. Judy is quite simply awesome. Her 19 years of experience establish her as one of the most competent nurses in the nation and I would not trade her for anyone.

Day 9... in the office

Last night I was able to re-configure one of my wireless router and drop it on the Schmanski's doorstep. Everyone was asleep by the time I got there.

Today turned out to be a much busier day than I expected it would be. It's now 11.20pm and I just getting ready to leave the office after starting my day at 7am. Of course Tori didn't leave my thoughts for one minute but it hasn't seemed to prevent me from being productive.

I wasn't able to make the much needed changes to the site today, might get a chance tonight or tomorrow.

Surfing around tonight, I ran across something pretty funny. I will let you guys figure it out. Click here to discover it. The counter was at '008' when I first visited that page...

Francis Filloux. M.D. - Tori's neurologist

While doing some basic research this morning (in between breaking Tori's site) I discovered that her Neurologist was actually the division chief at PCMC.

He gives lectures and participates to panels at the Utah Science Center.
His work on Inhibitory Deficits in Tourette Syndrome has been published in many medical journals.

He appeared to me like someone in shape. Turns out that as recently as a few weeks ago, he was awarded at the Waterford 8th Annual 5K for taking second place in his class. He also took 85th overall place at the 2004 Deseret Morning News / JZZ - TV Marathon...

Francis Filloux, M.D.

PICU: Child first and always

This is my very first post on (and also the first post period).

While talking to Tori's father last night, he appeared anxious to find a way to communicate more efficiently with all the people who love Tori.

It was the least I could do to try and setup something that would allow those who care about her to communicate and share their stories and thoughts.

5 years ago, Tim's family has been so welcoming. They have taken us to become part of their life and I will be eternally thankfull for that. Maria and Tim have some of the most wonderful children anyone could ever wish to live with and see grow. Tori is no expection.

The love and hope that Tori's bestfriend has for her is unbelievable. Tim took this picture recently and I wanted to honor her friend by including here in my first post. For those of you that do not know me, I believe that a picture is worth a thousand words so here it is:

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