Tim Schmanski's blog

Greetings,

Tori continued to sleep solidly during Sunday night and woke up only between 5:00am to 6:00am and then went back to sleep for a while after that. She is much, much calmer and back to a more normal temperament at this point. We also held off on any of the cognitive stimulation medications for today.

During Tori's OT and PT session they stood her up strapped to the Standing Table. She lasted in a standing position for about 18 minutes which is quite good. They tried taking her mind off of her position by flipping through many of the magazines in the room. She had an extreme workout by doing this since she was sweating and breathing very hard when by the time she was done. She was rewarded with some mashed potatoes and water after she settled back down.

The bad news of the day may be that her J-Tube has slipped out of position again... It may have been due to her therapy today and at this point it has NOT been confirmed with an x-ray. We noticed feed in her stomach down drain bag this afternoon. At this point we have decided NOT to stop her feedings though we have lowered them to 40ml per hour. We are going to test her stomach to see if she can handle it. We wanted to wait until she was at 100lbs before trying this but the circumstances dictate we have to try it now. I'm happy to report that thus far she IS handling the stomach feeding. Maria will be watching her very closely tonight as the risk of her vomiting is still present. We shall also see what the x-ray indicates when they take it.

Tori also had Bree and 15 dancers from the Studio One dance team visit today and there have been several postings already on the site by some of them. They came during a break in their preparation for Tori's benefit concert this Friday. Tori was collected and calm for about one minute as she scanned all of the bright and smiling faces surrounding her bed but then her emotions surfaced and she began crying steadily. At that point there were about 15 other girls crying right along with her. Being there and feeling all of the love and support these girls have for Tori is just amazing. In watching Tori and all of them interact, I truly believe they strengthen and inspire each other. After the girls left Tori immediately calmed down again and I cannot wait until she can enjoy company like this once again. Soon Tori, soon. And thank you all once again for coming to visit Tori today. You DO make a difference in Tori's recovery!!

Tori closed out this busy day with another hot bath which she fully enjoyed as usual. Please offer your thoughts and prayers for Tori's stomach and digestive system to remain strong. She has come to far to go backwards again.

Thank you everyone,

-Tim

Hello again,

Tori's Provigil 'awakening' continued throughout the entire night on Saturday... Yes, she did another all nighter and was upset and crying for almost all of that time :-( She finally went to sleep at 9:00am Sunday morning. Needless to say but Maria didn't get any sleep either...

As I mentioned in yesterday's update, Provigil was taken off her list of medications and an alternative cognitive stimulator will be discussed tomorrow. Amantadine is the next one on my list to try but we shall see.

Tori did get some OT and PT therapy today that revolved around some great stretching because she was sleeping of course. Tori also had some visitors today including sister Whitney and Sophie and the Depalma family. She ended up sleeping throughout their visit but she did wake up between 6:00pm and 6:30pm and had the chance to meet the Hansen family from Payson, Utah. The Hansen's came up to see Tori's neighbor Casey as well and brought some snacks for Tori and us to enjoy. The Hansen family learned of Tori and have been offering their prayers and support as they have been through a similar experience with their daughter Nicki who acquired a TBI about a year and half ago. I had the pleasure of meeting her today and she also met Tori. Thanks for visiting and it was nice to meet all of you. Chris and Sheryl Dowling also visited today but caught both Tori and I napping... Please feel free to wake me up next time guys!! :-)

Tori finally woke up again between 8:30pm and 9:30pm tonight and uncle Todd and Brayden were able to visit while she was calm and awake. I also ended up feeding Tori another whole 4 ounce cup of applesauce and quite a bit of water as well. Tori gets her water through a sponge on a stick and she absolutely knows how to get ALL of the water out by clamping down on it with her teeth.

I'll close tonight with the fantastic news of the day!! Tori was weighed and came in at 96.4lbs!! Way to go Tori!! :-) She did frown a little though when I told the nurses I wanted 15lbs more on her ;-) She is also sleeping well right and hopefully it will last all night so she will be well rested for tomorrows activities.

Thanks everyone,

-Tim

Hi there,

Tori finally slept well for me during Friday night. It looks like the benedryl and melatonin cocktail is here to stay but we are not sure about whehter that applies to the Provigil we have been giving her...

Provigil ins intended to 'awaken' Tori and today we didn't have a favorable experience with it. She was on a 100mg dose at the beginning of the day and that was upped to 200mg on Friday. Well today Tori was very, very agitated and crying throughout most of the day. Even Marilyn and Kenzie couldn't calm her today... After a 5 mg does of Valium she finally settled down and was able to watch some episodes of '24' with Maria and Sophie. A long, long time ago we had a similar, though far more extreme, reaction with Ritalin. So we are going to stop the Provigil medication at this point until we can speak with Dr. Vickroy on Monday. Provigil is also used for military purposes to keep Air Force fighter pilots flying for many, many hours... So we are hoping Tori can calm herself down enough to sleep tonight.

There are several other medications that can be used for cognitive stimulation and we might be trying those beginning next week. Using various medications is definitely a trial and error process which will continue on for quite some time. Each individual reacts uniquely to medications and it is NOT an exact science by any means...

On Friday it was also evident that Tori was much more aware and awake because Cheryl, her OT therapist, began discussing the accident and Tori became very, very upset. Afterward, Tori was challenged to continue fighting and trying to improve. Please believe me, it is not easy to witness Tori struggle so greatly with very primitive and basic movements but her will, and determination are evident when attempting them.

That concludes the update for today. Tori did have another nice bath tonight that calmed her for a little while. I'm hoping that both Maria and Tori will rest well tonight.

Thank you all,

-Tim

Hello all,

Tori returned to some inconsistent sleep patterns again Thursday night... The nurses and technicians have to keep coming into her room every two hours to change her because she is getting full feeds and TPN non stop and it goes right through her... Then she has trouble getting back to sleep and by the time she does it seems they are there to change her again... Beginning tonight we are giving her benedryl once again to see if it will help her sleep. The benedryl and melatonin cocktails used to help her sleep wonderfully so we shall see.

Tori went through her normal stretching routines today and did some more standing and sitting. She also had a couple of new tasting items one of which was a lemon square and the other being butterscotch pudding. She really enjoyed the butterscotch pudding and wouldn't select any other of her options today. I also let her work on a cotton candy sucker for quite a while this afternoon.

Tori is becoming more and more vocal and we are now waiting for her to make noise as a request for say another bite or to watch a movie. Her screaming is also getting louder and louder and that is fine by us :-) Speaking of movies, Tori watched the Disney movie 'Ice Princess' tonight and focused intently on the entire movie. She even ignored Cory while he gave her medications and positioned her.

Tori had a nice bath tonight and she seems very ready to go to sleep. I surely hope we both have a restful night.

Thanks again everyone,

-Tim

Hi there,

Tori finally broke her inconsistent sleep patterns last night with a very solid night of sleeping. All of the pumps and monitors were working properly as well so there were NO constant alarms to deal with. She slept until 9:00am and had another slight nap afterward just prior to her 11:00am PT session.

Tori went through her normal stretching routines and did some more standing and sitting. Cheryl also played some Hilary Duff music for Tori and from what I understand, Tori did seem to enjoy it. During her OT therapy she had a new treat which will make the frenchman Guy proud. Yes, Cheeze Whiz, some of the finest cheese around ;-) Tori had several spoons of it today and she didn't reject it at all. I also gave her a whole 4 ounces, or 15 small spoon portions of apple sauce tonight. She had it while Guy and Shaid were visiting.

Staci came in later for Tori's ST session and gave Tori more candy cane and 'grape slushie'. She also continues to work on Tori's 'yes and 'no' responses.

I neglected to mention that Tori was weighed earlier this week and she came in at 92.4lbs which is definitely moving in the right direction. We are hoping to weigh her again soon and another 4lbs would be great to see!! :-)

I also want to mention that Tori was very, very nice to nurse Cory tonight which was great to see!! Tori is typically the very vocal in the form of screaming when Cory is around... Tonight Tori even let Cory change her PIC Line dressing without even a scream or crying!! She just watched him calmly. Cory was beginning to have a complex so thank you Tori for giving him a little break tonight :-)

Alright, that is the short update for tonight and hopefully Tori and I will have a great night of sleep.

Thank you once again,

-Tim

Hello,

The pattern of inconsistent sleep continued during Tuesday night as Tori had more difficulties after changes and repositionings once again. We tried spreading the nurses times to every 3 hours but Tori's feeding pump had many issues last night. The pump would not flush at the appropriate times so an alarm would sound every 15 to 30 minutes. I tried to sleep with the nurses page button in my hand and each time the pump failed I would ring the nurses again. It was quite frustrating for all of us and they had NO other spares in the hospital... Tori had more sleep than I did because she could at least sleep through all of the alarms. They rented a new pump in the morning when the dayshift nurses arrived.

So Tori and I slept in quite a bit this morning and she went all the way to her 11:00am PT session. Enrique, Angela and Cheryl had Tori standing quite a bit and helped her move her legs in a walking fashion. Tori also sat in a chair for a while and balanced herself. TJ and Lorrie visited during the session and Gary and Toni stopped in for a visit as well. We sat Tori in her wheelchair for some time afterward.

Tori enjoyed more whipped cream during her OT session with Cheryl and had some new treats during her ST session. She had a peppermint candy cane and a grape 'warm slushie' (grape juice and corn starch for texture). Tori did very well with them both. She continues to improve with her 'yes' and 'no' cue cards as well. The therapists are trying hard to get her to use her voice more to signal a want or need. Instead of just opening he mouth for another bite they want her to 'hum' or make another sort of noise. This will take alot of patience from all of us.

Tori's shaking greatly diminished today so it appears the extra valproic acid is working already. Tori was in a very good mood today and was also very awake and alert. We are not sure if the Provigil had anything to do with this or if it was just a great day for Tori.

Maria is spending the night with Tori tonight and I am hoping they both sleep very well.

Thanks everyone,

-Tim

Good evening,

Tori and Maria didn't sleep very well during Monday evening... Tori's sleep was inconsistent as she couldn't comfort herself after changes and repositionings again... I think we are going to make some changes on that process and perhaps go every 4 hours instead of 2 hours starting after 11:00pm. No full room lights either. That will probably help Tori sleep much better and we used to be on that cycle at the PCMC.

Tori ended up napping for while in the late morning. Her PT session today included some basic arm and hand stretching and the one where they lay her back on the bed with her feet on the floor to stretch Tori's hips. Tori did much better on this one today and didn't even appear to mind it. Tori was then placed in her wheelchair for a while and she had more chocolate pudding today.

Tori was exhibiting some bad shaking again today and when we read her valproic acid levels we knew why. She was at 56 when she should be in the 80-100 range so her valproic acid medications were upped immediately from 600mg to 750mg per dose. This will help her greatly on the relaxation front.

Tori is getting better at selecting visually the 'Yes' or 'No' signs we are using to help her. She will also turn her head to the side and close her eyes on a 'No' answer. She signals 'Yes' by doing nothing at this time. I can still ask her to 'open her mouth' or 'show me your tongue' at any time and she will comply. I also had her moving and wiggling her fingers today after I demonstrated it for her.

We are also starting Tori on 100mg doeses of Provigil or Modafinil tomorrow. It is supposed to help Tori in cognitive areas and help her focus as well. It is the first to try on a long list of medications to help on this front.

Tori appears quite tired right now and is trying to go to sleep. Her 10:00pm medications are being given now so hopefully they do the trick!! :-)

Thank you all,

-Tim

Hi all,

Tori continues to need a little recovery time each time she is repositioned or changed during the night. She will usually cry for 10-15 minutes afterward but then she will go back to sleep. She slept in until 9:30am this morning when Maria arrived at the HSH.

Tori was hardly agitated today and was in good spirits almost all day. She only had a half dose of valium late in the afternoon to calm her for another 'A Cinderella Story' showing. Her PT session today included all of the normal arm and leg stretches and a couple of new stretches. One had Tori sitting at the edge of the bed with her feet on the floor. They then laid her back on the bed behind her to stretch Tori's hips and needless to say it was working because Tori was not happy at all... Next, they laid her on her side in the bed and stretched her legs by moving one forward and the other backward. She was in a 'running' position lying down basically. Again, the displeasure on Tori's face showed it was working...

Cheryl and Staci then visited for some OT and Tori did some serious eating!! Chocolate pudding, pumpkin mousse and apple sauce were the menu today :-) Cheryl makes Tori pick which one she would like with her eyes and the pumpkin mousse and apple sauce were her favorites today. She especially enjoyed the apple sauce due to the texture we believe. Tori can 'grip' it better in her mouth and move it around to be swallowed. Hopefully, instead of calling this an OT session we will call it LUNCH in the near future :-)

Ryan and Melanie also visited today along with Todd, Laurie and some of the kids. Alright, I think that is the short update for tonight.

Thanks everyone for your continued prayers and support.

-Tim, Maria, Tori, Whitney and Brendan

Hello once again,

Tori's sleep during Saturday night was a little more disturbed than the previous nights. After she was repositioned or changed it just took a little longer for her to get settled and sleeping again.

Tori was agitated for most of today and we are finding that ibuprofen is not relieving her pain as we would like. She is able to get valium every 4 hours so we have been giving her half doses a couple times a day. After she has a half dose of valium she calms down immediately and is much more relaxed. Her feeds and TPN are still being administered and hopefully her next weigh in will be much more positive than the past one...

Enrique and I gave Tori a PT session today. Her legs were stretched first and Tori will push out her legs on command during the stretching. We then sat Tori up on the edge of the bed and then stood her up several times. We also had her try and move her feet in a walking fashion. She has great difficulty in doing this but she is making the effort.

With no scheduled OT or ST today I treated Tori to suckers and chocolate. Tori also enjoyed her favorite movie "A Cinderella Story" twice today :-) Grandpa and Grandma Harris visited today and Guy and Whitney came up during the late afternoon.

Thank you,

-Tim

Hello all,

Another night of great sleep for Tori and I!! We headed up to the PCMC around 9:15am today for our GJ-Tube appointment in radiology.

The ambulance ride went very well and we ended up waiting until 11:00am or so before Peter was available to fix the GJ-Tube. The delay was not an issue at all as Tori just remained sleeping on the ambulance stretcher. Once Peter arrived he reset the GJ-Tube back into Tori's stomach and verified the position on the J-Tube. The J-Tube portion is at least 12" past the SMA Syndrome and is still in a perfect position thankfully. The whole procedure took about 15 minutes and then we headed back to the HSH. We are now going to keep bandaging completely around her GJ-Tube to prevent this type of external slippage from occuring again.

Once back at the HSH, Tori had more batches of whipped cream and chocolate and I even gave her quite a bit of vanilla pudding as well. She watched "Daddy Day Care" during the afternoon and basically relaxed the entire day. We even had a nap between 2:00pm and 4:00pm. She missed PT today becasue we were at the PCMC.

Grandpa and Grandma Schmanski visited again along with Whitney and Brendan. I'm hoping that Maria and Tori have another great night of sleep.

Thank's again,

-Tim