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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.
Love,
-Guy

Hello everyone,

Today was a busy day for not only Tori but for Maria, Sophie and I as well.

Tori is recovering nicely from her operations but she is still taking some pain medication which seems to make her even more drowsy. She was still awake for much of day and the ventilator was removed for approximately four hours. She was breathing through her Trach completely during this time. This exercise will be repeated through the next few days to make sure Tori can handle her breathing on her own. Once this occurs and the Trach is healed she will be listed as 'Stable' and we will be able to relocate her.

I was not able to solicit a smile from Tori today so I tried another tact. I finally demonstrated and asked her to move her jaw and mouth around in a circle and she actually complied immediately and did it. She did it only once, but it happened and the nurses witnessed it. Tori also continued scanning the room and focusing on objects during her awake times. She also really seems to enjoy her daily massage on her legs each morning.

We are also cutting Tori's Keppra intake in half tonight starting at 8:00pm. She gets two doses a day, one at 8:00am and the other at 8:00pm. We are experimenting to find the exact levels needed to prevent her Myoclonic seizures. The belief is that the less Keppra she takes the less drowsy she will be and hopefully the more interaction she will have. This should make tomorrow more interesting for sure.

Maria, Sophie and I also went to visit the South Davis Hospital where Tori was scheduled to go next. One of the probelms we have with this hospital is that it is another 20 minutes further from our home in Orem. The wrong direction for us... Our commute would be at a minimum one hour and 15 minutes one way. We were given the tour at 11:00am and to be perfectly honest with everyone it was eye opening and depressing. Seeing all of the long term patients with various and serious disabilities made the reality of Tori's condition hit home very, very hard. Maria and I were in immediate and complete agreement that Tori would not be spending any time in this facility or any like it. We would much rather give her support a shot on our own and have her at home with her family, friends and some professional home care help. I am still going to research and personally visit some more Rehabilitation Centers in the Orem area and if a one fits the bill it may be used as an interim solution until we get our home prepared. So more touring for Tim is on the schedule for tomorrow.

I remember in 8th grade, Tori was a T.A. for the office and i was a T.A. for the counciling office right next to each other in 1st period. both of us would get bored and just go and walk around the halls and of course Tori would find something fun to do! On one of the long days our teachers had us put signs around the whole school, we thought it was going to take forever because we didn't know how to use the tape gun! Tori decided that she was going to give it a try, we were both all taped up and to say the least, our signs didn't look much better hanging there on the wall! when we got back our teachers had already seen some of the signs that we had hung and they just laughed because we had used the whole thing of new tape, and all because we didn't know how to use it right! Tori you are doing great just hang in there! I love you so much and everyone is praying for you!
--Brooke Adams

Maria and Tim,
We were glad to here that the surgery is over and that you can see that cute face once again. We are sorry that we have not been up to see you for a while, things have been busy, but please know that you are still in our thoughts and prayers. We are going to try to come up at the end of the week if all goes well. Let us know if we can do anything. Hang in there! We love you all!
Love,
Dan, Sharon, and kids

Hi Maria and Tim. Thank you so much for the updates. I know this takes precious moments away from you hectic schedule, but we sure do appreciate it! I realized that I did not know my great niece very well. All of the stories and pictures have made me feel closer to her and to you and I hope all of you can feel that. We are so proud to be Aunt and Uncle to such strong and courageous people. Thanks, Guy, for taking time to enter updates and keep us informed. Hugs and kisses, prayers and strength! Love ya!

I'd like to give a BIG THANK YOU to Guy today for providing almost live BLOG updates throughout the day!!

Tori was awake again when we arrived this morning and she went into her surgery at 10:00am or so as Guy mentioned. Maria and I went outside to make some phone calls and when we returned ALL of the lights were out inside the hospital. As we wound our way through the pitch black halls we finally bumped into a hospital worker who assured me that there was emergency power provided in the surgical rooms... The lights came on after about 5-10 minutes and shortly after that our surgeon came out and explained that they were only able to get the G tube completed. The Trach would need to now come later which meant more anesthesia for Tori...

From what I understand, the power outage started with the main provider Utah Power going down and each of the 4 backup stations also failed!! Unbelievable isn't it?!?! The emergency generators then kicked in and they are unable to power the entire hospital including some of the equipment in the surgical rooms. One of the doctors in the PICU mentioned that a open heart surgery was going on during the outage and the only light on was the one attached to the top of the surgeon's head... Very crazy to say the least...

Tori went back in for her Trach at about 7:00pm and as we all wished her well before the surgery she broke out in tears again and had that very grimacing and saddened face. It is soooooo tough to witness and both Aunt Laurie and Sophie were emotionally moved and in tears again themselves. Again, I know in my heart she DOES at least hear us!! Tori was then back in her room after the Trach surgery around 8:30pm. We all could finally see our Sweet Baby's mouth again!! She was still under heavy anesthesia at the time so we can hardly wait until tomorrow morning when she is awake. Hopefully tomorrows update will include a description of a totally unblocked smile. We shall wait and see.

Thank you all so much again for your prayers and support and it is great to see that some of you are sharing your own personal experiences with Tori on the site. I have learned so many new things and have found out so much more about Tori's overall goodness by reading all of the journal entries, BLOGS, Comments, etc. Please keep posting!!

Well, usually, I can easy write and Guy is the one who has trouble... It's the other way around this time! And writing in English makes it even harder.
I am having so much trouble write about ToRi. But I didn't write anything for more than a week, so let's go!

After a busy week at work, I went to visit ToRi last week some nights, as well as Sunday for Tim 46th b-day (I don't like the ribs from tgi friday), Monday and today.
Monday was really hard for me: toRi cried when she coughed. My heart broke in 2 parts and I cried again and again Tim had to hold me!
(My mum will yell at me that I have Tim help me again...) But I cannot hold my emotion inside.

I admire Maria and Tim so much. I could not be the way they are. They are so strong. I try to help them, but I feel like I don't do anything. ( That is because of Guy who is been so helpfull to them).
Tomorrow, I am going with Maria and Tim at the rehab facility in the middle of nowhere ( I can not spell the city).
I will do my best to be strong for you my friends...

Just a quick note to let you know I'm keeping good thoughts going your way. Hope things look up soon.

Gwen

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.

Happy Fourth of July everyone!! :-)

Tori had another good night of sleep on Sunday and she was again pretty much awake for most of the day today. This morning I also saw her raise her left thigh and leg and place it over her right leg. I don't know if it means anything or not but it was something new. Tori was also awake upon our arrival today and she offered up a couple more smiles behind the big venitlator tube that is still in her mouth. At one point today when she was really in an awake state she was scanning the room with her eyes looking at people, the TV, various other items and she was trying to follow the sounds as we talked to her. Again, we don't really know what she is seeing, hearing or thinking but it sure does appear she is responding in some fashion. One of the Lead PICU Doctors was in the room with us at the time for about 20-30 minutes to see first hand why we still have some hope and faith in Tori. We also acknowledge that the odds and statisitcs against Tori recovering in any fashion are still against us but that will not stop us at this specific point. I also requested of her to try and reduce Tori's Keppra intake since we have not seen anymore Myoclonic seizures. Reducing the Keppra may or may not take away some of Tori's drowsiness. There is only one way to find out.