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Thinking of you. Hope that this day will be a peaceful one for all of you. How thoughtful you are to mention Brady, Tori's roommate. Even though you are enduring so much emotional trama, you are still thoughtful enough to think of others and their personal pain. We all need to do that for others! Another good lesson you have taught me. Good luck with the car wash. Wish I could be there. Hope to see some photos. Love, Auntie Jill and Uncle Donny.

Tori had a very relaxed and sleep filled day today. She did have to have a couple of half doses of Morphine at 3:00am and 7:00am but the agitation, Myoclonus and Clonus episodes seem to be diminishing. She woke up for about a half an hour at 8:00am and after that she slept in a deep and very comfortable state. She was placed in her practice wheelchair again for about an hour at 1:00pm and then had a sponge bath and shampoo afterward followed by more sleep. Seeing all of the sleep was very good today because she did it on her own for the most part. We are sure she needed some catching up to do over the last few days... She was awake again tonight without agitation before I left at 9:30pm. Tori just looks and feels alot better than she has over the last few days so hopefully the medications are taking effect here.

Tori had also begun feeding again through a continuous mode and is now recieving the missing drugs again as well. She held down her feeds today since she had NO Morphine!! We still haven't moved to the NTU so we'll hope for it again tomorrow.

Sorry for the late report tonight as I went to take a quick nap with Brendan and Whitney and now it's 5:00am on Saturday...

Thank you again everyone and please include a special prayer for Tori's room mate Brady who passed away today. May you rest in peace Brady.

-Tim

I was wondering if she is a Days fan because my sister can get an autographed picture or possibly a visit from one of the members of the cast. She was going to write about this but she has been busy today so I am doing this for her. If anyone knows if she is than please post to this and comment about it. Thanks. I hope that things are going better today for Tori. I look forward to reading the latest edition of Tim's or Guys comments.

Crystal

My dear Schmanski family, again my name is Jane my daughter is Rachel. Tonight as I read through the last few days and even hours of ups and downs and I want/wish for your wife's pain and exauhstion to stop, now I know that is not really possible but stop in the way that she might have a nap with a real dream, eat without getting sick, hold Whitney, or your son and just simply hold them with nothing else in her mind. At some moments in the day or darkest of nite (or your just not really sure because time is now in a tunnell and it never stops and never starts), when you are in the hospital environment; it seems that it is all too much to imagine and yet it is, you and your family are doing this with amazing grace and dignity. May God continue to bless you all in even the smallest of matters eating well, driving too and from the hospital safely, up to the big ones that Tori will have a bed open up soon in the right unit. The list does go on and so do the prayers God Bless Jane Perry (and Rachel)

Hello everyone,

Before focusing on the negative aspects of Tori's day I wanted to accentuate the positive activity Tori has displayed over the last several hours tonight. The last Morphine injection was given to her early this morning so the effects are finally wearing off. She was alert, awake and bright eyed for 45-60 minutes tonight around 8:00pm or so. This is very good to see again as it's been a few days since we have seen this behavior. She is now sleeping very comfortably with only Benadryl in her system. We are going to resist giving her anything stronger as much as we possibly can tonight.

The previous part of the day was unfortunately not as pleasant again... The blood and throat cultures that were taken very early this morning as well as the chest x-ray have thankfully turned up negative for any issues. Tori did however vomit a couple more times again today though they were not nearly as extreme as yesterdays. Tori's main issue at this moment is that she cannot digest any of the feeds they are giving her. When she begins to get agitated and starts to vomit they have to suction out all of the feed she has recieved through her G-Tube. The other real bad part of this equation is that NONE of the drugs taken via her stomach are going into Tori's system... They have now switched over most of the drugs back to go into her PIC line but there are several drugs she is taking that cannot be administered in that fashion. We also believe that the Morphine itself is causing her nausea and vomiting because none of that occurred before she started taking it. So we are now extremely motivated to keep her off the Morphine!! Tori is also losing more weight because of the missed feedings so this just has to be corrected as soon as possible.

We primarily used Haldol today to fight her Myoclonus and Clonus episodes. I think the Botox in her calfs and the extra Baclofen is beginning to work because the episodes were very minor compared to the last few days. But then again the Morphine may have affected that as well... Perhaps tomorrow will be a better indicator.

Upon returning to Tori's room after my morning update, the physical therapist team was performing the standard routine on Tori. They also decided to give Tori Botox injections in her calf muscles on each leg. The Botox will moderately paralyze her calf muscles which are causing the majority of Tori's pain during Myoclonus and Clonus episodes. The Botox takes 24-36 hours before it is effective and lasts for 3 months. Our big problem for today was the very painful aftermath of the 3 injections Tori recieved in each of her calf muscles. The doctors used an EMG to locate the exact position in each muscle to place the Botox. The needles went well into Tori's muscles during the placement. Tori obviously became very agitated shortly after the shots and she started having severe Clonus episodes not only in her legs but in her arms and torso. We immediately gave her the typical dose of Haldol to ease her pain, calm her and to put her to sleep. Today it unfortunately had NO effect on Tori... We then gave her an additional dose of Baclofen which worked well at 2:00am episode early this morning. It also had NO effect... By this time two hours had passed and we were left no choice but to use Morphine to totally knock Tori out. It was very frustrating to all of us working with her today including the doctors and nurses. Tori will be very challenging to us all as she gets through this over the next few days or maybe even weeks...

Tori then slept until about 5:00pm or so before she started having more severe Clonus episodes. This time she became so upset she vomited her feed everywhere and choked somewhat as well during the process. The nurse had to use a syringe to extract the feed she was given from Tori's G-Tube. We cleaned her up and changed her bedding and she grew more and more agitated. Her heart rate spiked, her breathing escalated and now her temperature began rising. She was at 37 degrees Celsius for days and now she was at 38.9 degrees... We ended up having to quickly repeat the Haldol then Morphine cycle we used earlier to knock her out again. The doctors now believe she Aspirated the vomit into her lungs which has now altered her breathing and given her a fever. Blood and throat cultures have been taken as well as a chest x-ray to try and determine the issue. Maria is staying at the hospital tonight and is awaiting the results just as I will be at home.

Tori's late evening yesterday turned out to be really difficult (she had the worst 'comfort' score at 9pm-10pm she ever had).

But before that, she was awesome. I remember Sophie and I walking in the room and being greeted with the same smiles that she sends to her friends. It was truly moving. She would look at you when talked to. She would try to sit up and it almost seemed like she was reaching for ways to communicate and interact with us. Being able to hold her hand and look at her in the eyes is fantastic. Especially when she would not let go of your hand.

Despite having fixed her computer recently, I do not believe she was fond of me lately because I tried to police her a little bit on the Internet. She would be online at some unholy hours during school nights. Having the user IDs of some of her friends, I now realize that she is not the only one...

Someone said to me this week their grand-mother saw Tori dance recently and recognized her picture in the newspaper. She said that Tori appeared to be the most humble of the dancers and that she performed perfectly that day. She remembered her because she found her strikingly beautiful.

A word about the title of this post: It was a conspiracy. It seemed like a few weird things had occurred other the past few days but being preoccupied by work and Tori's situation, it didn't seem all that relevant. One of my close colleagues is visiting Provo/Orem from Boston this week and I mentioned to my wife that I might invite him to stay at our house one night if we needed to work late. She went ballistic saying that she couldn't deal with a guest right now and that it would not work. I didn't want to make a big deal out of it so I left it alone. Tim and Maria had big grins on their faces. Today was Lagoon day for Novell employees. I offered to Sophie to take Whitney and her friends(s). She wanted for 4 tickets. I asked who the tickets were for and she said that a friend of hers would come as well. When asking a bit more details about, things appeared awkward again but it really didn't bother me.

The PICU doctors just completed their morning rounds and we are now going to double the Baclofen dosage and starting providing the Beta Blocker Propranolol again. We had discontinued that one a while ago due to some PVC's we were seeing on Tori. We found out the cause of the PVC's was due to the fact that Tori's PIC was 4 centimeters too far into her heart yesterday... We pulled it back so now the Propranolol can be given to her again.

At 2:00am or so last night we had to give Tori an Ativan dose and an extra Baclofen dose to get her to sleep again. The extra Baclofen seemed to stop the Clonus activity immediately so maybe we are finally on the right path with this drug. That was the only time she woke up last night.

This morning she is doing pretty well and the physical therapist is on the way right now so I'm heading back to the room.

More updates later!!

-Tim

yes, i went up today to. and it was so good. i went up on saturday, and its been like what.. 3 days and she just seemed better today to me. she was so happy to see us ,i could tell. i just love that girl haha. . i love seeing her... seeing her just looking at me and smiling. knowing that its me... and i know she does. i talk to her about everything.. i want to tell her so much more. i can't tho.. but i just want to have my daily chat with tori. where we just talk about everything. eachothers problems, boys, dance, girls haha. everything. i was able to talk more normal today... just how i normally would and she just laughed along with me. i love it. we told her how we made fun of her in tap today cuz when we would improv she would always clap and like.. fly her arms haha its the greatest. .and we told her that and she just smiled and laughed. cuz she knows she did do that and haha.. yeah. i know she can hear us. ahaha she woudln't just smile like that. this visit was great. and i know she loves us. when we walk in and she just crys.. she misses us. and i miss her so dang much. i can't stand it. i just want her to know im always there for her. i wish i could just get one of her big hugs i always got. i just wanna give her a great big one. and have her laugh and just talk to me. ask me questions.. everything. today. .she was tryin to sit up.. tim said she was showing off haha.. but i just wanted her to sit up.. jump out and come play with us haha. and of coarse shes showing off.. shes come so far.. heck i would be to haha. well. yeah. i just love seeing her. it just makes my day. she is doing so good. i'm so happy. i jsut love how when we go tim is so dang cute with her. he makes her so much happier to see us cause he makes he excited and tells her were comin. i just love that guy. and maria.. its just like seeing our tori. ya look at her and ya gotta double check. and they act so much alike. i like being around them. they just make me feel better. if i cant always be with tori.. i would want them. there the next best thing to her. i love you guys. thanks for letting me just come up there to see tori. i love that girl.

Hi everyone,

The majority of Tori's day was very positive today but at 9:00pm or so tonight she had another severe Clonus episode. Her Melatonin and Valproate doses were given just prior to 9:00pm so we thought they might finally put her to sleep. It didn't quite work so Haldol had to be given again to calm and sedate her... It is probably a good thing for tonight anyway since they are extubating Tori's room partner Brady tonight and there is alot of noise and people inside the room. She could never sleep through that normally. Speaking of sleep, we have been trying like mad to get Tori to take a nap during the day and have been unsuccessful. Tori's agitation would be far less severe throughout the day if we could get her to just rest for a little bit. We're not sure what to do about this yet...

I also spoke in depth to Tori's neurologist Francis today and actually had him come witness an episode of Tori's Clonus in the late morning. He diagnosed her episodes as Clonus rather than Myoclonus because Tori has more constant muscle contractions and posturing during the late stages of her episodes. He also placed her on a new drug called Baclofen which is again supposed to limit the Clonus or muscle contractions. The first dose was given at 3:00pm today and given tonights activities the dosage will probably have to be upped tomorrow... He explained to me that there is a vicious cycle between Tori's agitative states and the Clonus or Myoclonus activity. One can cause and feed the other at anytime and when they are both severe is when we have the most problems... He also stated again that the Clonus activity should be temporary and last anywhere from one week to a month. We are hoping for the one week option for sure...