Tim Schmanski's blog

Hello everyone,

Update 4 (05:02am)- Well, the Valium didn't touch Tori of course and now, after 6 frustrating hours in the ER, Tori is finally being moved upstairs to the CMU... Tori began storming around midnight and I asked then for some Dilaudid and she still hasn't quite received it... I also forgot to mentioned earlier that her temperature hit 40.5 degrees Celsius which is 104.9 degrees Fahrenheit. Alright, Tori just arrived in the room so I'm finally, finally signing off for the night.

-Tim

Update 3 (03:38am) - we are supposed to move into our next CMU room around 4:00am this morning. Tori made it 100 yards from the hospital before she vomited in the ambulance. Maria was with her and is unsure if she aspirated or not. Tori vomited again just after her x-ray and I thought she swallowed it on that occasion. She vomited one more time just before we had her back to the emergency room. Antibiotics have already been given as a safety measure as well as Valium and some additional pain medications. Tori's Heart Rate was between 175 and 185, her Respiratory Rate between 80 and 90 and her Blood Oxygen is holding at only 90%. The Valium finally caused all of the readings to drop and I believe she is sleeping now prior to being moved to the CMU room where I am at now. It's amazing how things can change so quickly and dramatically... Please keep Tori in your thoughts and pray for her to have quick recovery.

Good night,

-Tim and Maria

Update 2 (10:34pm) - we just decided to just take her back to the PCMC instead of the Altaview Hospital. They just know her the best and we are far more comfortable with them. I'll update when I can.

Update 1 (10:34pm)

I will need to provide todays update later tonight in what I hope is a few hours away. Maria and I are taking Tori to Altaview Hospital which is up the street from HSH at 10:45pm. Tori has been very agitated and in pain for the later half of the day and we are seeing feed in her G-Tube vent from her stomach again... We are speculating the J-Tube slipped out of of her small intestine again and we need this addressed ASAP to prevent another possible aspiration. We definitely can't risk that happening again...

Thank you all and I'll update this when I can,

-Tim

Hi there!!

Tori slept pretty well for Maria on Saturday night and Sunday morning and she also slept with the trach button plugged for the first night!! She is still coughing quite often and she hasn't mastered swallowing after coughing so she gets somewhat excited at times. The phlegm is very loose but since she has inconsistent swallowing you have to get up and suction her mouth with the wand. It makes for a long night if she coughs alot...

The PT and OT therapists did some work on Tori this morning and Maria continued going right after they left. More of the same stretching and balancing exercises and after Maria was finished Tori took a late morning nap. She woke up again when I arrived at the HSH around 1:30pm or so.

Tori's visitors really started to appear at that point. Chris and Sheryl, Mark and Julie and the kids, Gary and Toni to name a few. I placed Tori in her wheelchair as soon as I arrived and we immediately went outside with all of Tori's visitors close beside. Tori spent a full hour outside getting some fresh air and watching just about anything that was moving or running by since Brendan and the Depalma kids were having a great time!! :-)

Afterward, we took Tori back inside for a real treat - a haircut!! Finally!! Tori's hair had grown to a somewhat uncontrollable length and Maria would spend an hour brushing out the tangles and blow drying it after each bath. So we went into the HSH hair salon and Julie proceeded to give Tori a good trimming. The finished cut looks far more comfortable and it should be much easier to maintain as well. With the haircut, Tori spent close to two hours in her wheelchair today.

Tori also had some late afternoon visitors. Jamie and her mom came into her room and spent some time and once again Tori fixated on Jamie for almost the entire time. Once they left, Whitney opened a can of tuna to have with her crackers and decided to give Tori a smell. She held the can below Tori's nose and Tori immediately turned her head away as far as she could!! I don't think she liked it much to say the least... Whitney then spent quite a bit of time hugging and talking to Tori. Tori makes quite a few sounds as Whitney talks to her. At one point Tori also moved her left arm over Whitney's back and had her in a nice hug position. Whitney loved it and stayed there a while and then she decided to get into bed with Tori for a bit. It truly was emotional and enjoyable for Maria and I to see once again!!

I'll close tonight by mentioning what a profound impact McKenzie's blog entry had on us all tonight. Reading it caused many tears to flow in Tori's room this evening because McKenzie's feelings are very familiar to everyone in our family. It greatly moved us and strengthened our resolve to help and support Tori in any way we possibly can. Thank you McKenzie for sharing this with all of us.

Until tomorrow,

-Tim

Hello there,

Tori slept for most of Friday night but it was hot in her room due to some more air conditioning problems... So she didn't really get into that deep sleeping mode that she needs until about 4:30am or so Saturday morning. She had her trach button unplugged again and had her humidified air mask on over it. She continues to have a good coughing spell every 1-2 hours throughout the night.

All of the therapists, PT, OT and ST ran through their typical routines except on the weekends they cut their time with Tori in half. So Maria, Guy, Sophie and I made up for the lost therapy and then some!! :-) We went through all of the stretching and balancing exercises that we know to this point on Tori. We had her completely exhausted by 7:00pm tonight. After that, we spent much of the remaining evening with Guy and Sophie because they are leaving for France tomorrow and won't be back for a month... We love you both so much and are going to miss you greatly!! Please come back soon!!

Maria and I placed Tori in her wheelchair today for another 1.5 hours. Today we spent most of our time outside as it was cooler and there was a nice breeze going by. Tori really enjoyed the outside elements today. We sat in the shade in the front of the HSH and Tori tried tracking all of the automobile traffic passing 50 yards away in front of her. She can track the automobiles quite well and whenever one would pull into the HSH she would track it until it stopped. If people were walking in she would track them as well. She tolerated and excelled with this type of stimuli the entire time we were outside. I believe the cooler temperatures will allow us to this more often.

Uncle Todd and aunt Laurie also came up today and gave Maria and I a chance to go out for dinner. Afterward we took Tori to her favorite place at HSH - the HOT TUB ROOM!! :-) She really, really enjoys her baths and I've now requested to the nurses that she gets one every night. The baths totally relax her and all of her arms, legs, fingers, shoulders, etc. are so easy to move and manipulate while she is in the tub and afterward. In fact, she doesn't even get agitated at all as we bend her in all sorts of directions. The heat just loosens her up just as it does to any one of us. It is absolutely a great therapy for Tori.

Many people ask me what type of sounds does Tori make and can she talk? The answer is that she makes many, many different sounds but at this time none could really be considered words. She will 'hum' in a wide variety of tones and loudness levels, she has snorted, sighed, yelled and even screamed at times. In fact just yesterday there were several of us away from Tori over towards the second bed in the room having a conversation and Tori let out a loud yell as if to say "Hey!! I'm over here you know!!" :-) She is always be watching us but this time she gave us, or seemed to give us, another type of signal. When she can consistently do it I will be convinced. So Tori continues to learn how to create new sounds and we are all hoping that she can make them tangible in the very near future.

Maria is spending the night with Tori and since Tori is exhausted and the air conditioning works I believe they will both have a restful night. Tomorrow and Monday we will need to continue with all of the extra therapy we are giving.

Thank you once again and good night!!

-Tim

Good evening,

Maria, Whitney and I left the hospital at 10:30pm tonight and Tori was just about heading to sleep. She had an exhausting and fulfilled day so she should sleep very well for Guy and Sophie's second night shift in a row. Thank you guys!! :-) Tori also slept very well on Thursday night and required only the 'Sleep Cocktail' of Melatonin and Bennedryl with an additional touch of Tylenol. She made it through the entire night with that initial dosage.

The therapy began with the occupational therapist (referred to as OT from now on) Staci working on Tori's recognition skills with family and friends pictures. It is still very difficult to keep her attention focused on this exercise but over time it should improve.

The physical therapist (referred to as PT from now on) Rhonda then ran Tori through her routine stretching exercises. She also fixed Tori's wheelchair so more lower back support is evident. We are focused on getting Tori's posture improved as she still tends to arch the lower left side of her back. We need to address this so everything else can straighten up correctly. Tori was placed into her wheelchair after her routine and Guy and Maria took her outside and around the HSH for about 1.5 hours. At that point she was placed back into her bed Cheryl, the occupational therapist (referred to as OT from now on) took over.

Cheryl had Tori sit up in bed with her back vertical and unsupported. They then bent Tori over and reached her arms out towards her ankles. At that point they let Tori attempt to sit herself upright while steadying her side to side motion. Tori tries her hardest each time and makes gains. By the end of the exercise she is truly tired. Maria, Guy and I repeated the same exercise later in the evening and Tori did exceptionally well!! We even had 'no hands' on her for several seconds while she attempted to balance herself. I believe the determination is definitely there and the strength is progressing. Again, patience and perseverance.

Maria and I also worked through another set of leg and arm stretching. All of the therapists are encouraged by the range of motion in her limbs. Tori's dancing experience has been a great benefit. Tori shows definite improvement on basically all of the stretches. In fact, we can now push her bent knees all the way to her chest which was entirely impossible not too long ago. She also doesn't seem to mind it nearly as much as in the past. X-rays were also taken on Tori's right hip joint and thankfully there was no indication of arthritis or anything else like that. Tori's arm, wrist and foot splits continue to be placed on and off every 2 to 4 hours. We are trying to loosen her right arm up a bit more. Her left arm is getting stronger and far more mobile. She now has the range where she can actually whack your face now if your not paying attention... She also seems to reach out with her left hand towards people as if to say "please hold it". Most people respond accordingly.

Tori therapy sessions are done by the afternoon and today Tori had some visitors. Ali and Amber came for quite a while then Jessi, another good friend of Tori's, came with several other girls. Jessi hadn't really had the chance to see Tori yet and I'm so happy she came today. Tori was very fixated on her for quite a long time. I was standing on the opposite side of the bed and when Tori would turn her head and look at me I would ask her "Where is Jessi?" to which she would turn her head to the other side and look directly at Jessi. I repeated this 4 times and Tori consistently reacted the same!! Thinking back, I should have had Jessi switch positions with one of the other 3 girls. I'm still learning here, I'll get better at this!! :-)

Alright, I believe that it's late enough for me tonight. Guy and Sophie? Feel free to add anything else I might have missed during Friday.

Thank you all and good night,

-Tim

Hello again,

Tori's Wednesday night wasn't as smooth as the previous three nights... She had her trach button unplugged and did seem to sleep but was coughing quite a bit and had mild Myoclonic tremors which kept her from solidly sleeping. Her eyes were closed for most of the night but her heart rate was at 125-135 beats per minute which is not at all restful for her. At 5:30am, she finally went into a deep, fully relaxed sleep and her rate went down to the correct 90-95 beats per minute. She slept until 11:30am and I immediately brought in the occupational therapist.

Since Tori was still kind of sleepy, the occupational therapist was able to stretch her arms and hands to degrees that are not possible when Tori is awake and tightening her muscles. By the time she was done Tori was definitely up though!! We also did additional back stretching with an exercise ball while Tori was in bed. With her knees fully bent and calves resting on the top of the ball, we would rotate her from side to side. This is another exercise where one shouldn't watch Tori's face... Tori seemed to have a very tight right hip joint and we may end up x-raying it to find out why.

We also did some picture recognition drills with Tori. She does seem to focus her eyes on the picture you want her to point out but it is so hard to tell. She cannot distinctly point or anything like that at this time. So we will continue to repeat this drill over and over until we can get a definite response type of some sort.

Tori took another nap from 12:30pm until 1:30pm when the physical therapist arrived. Tori had even more stretching done to her legs then we sat her in a standard chair once again. We wrapped a sheet around her and pulled it tight against the back of the chair. We then bent her over and had her try to bring her head, neck and upper back to a vertical position. Tori tries so hard!! She can almost get to the top but eventually tires. She did MUCH better than the last time I witnessed this test. Patience and perseverance!! Tori WILL get there!!

We then placed her in her wheelchair and toured the HSH again and we also went outside for some sun and wind as well. Her total chair time was about 1.5 hours today. We placed her back into bed when we finished and the speech therapist took over for a while. I believe she ran through her standard tasting tests.

Tori also had Captain Hook come visit her today. Captain Hook is a cocker spaniel dog and he didn't really get any sort of reaction out of Tori. This happened in the early evening and Tori was pretty exhausted at that point. Apparently, dogs and cats will be common visitors from this point on.

Tori closed out her evening with another totally relaxing bath and tonight Guy and Sophie are going to be staying with her. We wish you both luck tonight!!

It was kind of a tough morning for me because one of the nurses actually dressed her in boxer shorts and a girls T-Shirt and that was the first time I've seen her dressed like that for 74 days... Tori is so stunning and it just looks like she should get up, walk around, hug and talk to me... How I long for that to occur!! Hopefully it will happen for all of us some day. All we can do is continue to hope and pray for the miracle we all desire.

Thanks again everyone for all of the support you are providing for Tori and us!! We love you all!!

Tim, Maria, Tori, Whitney and Brendan

Hello everyone,

Tori slept well once again!! A new, positive streak is in effect as Tori slept from 10:00pm Tuesday night until 6:30am Wednesday morning. She required NO Valium last night as well.

Tori had a heavy physical therapy day and they actually used the tilt table on her. She basically gets strapped onto a table which then tilts to an almost completely vertical position. So Tori is essentially standing once it is tilted and she actually responded quite well to this new therapy method. Once that was completed she was placed in her wheelchair and stayed in it about 3 hours!! Again, one of the main goals we have is to keep her out of the bed as much as possible so Maria toured the HSH with her and even went outside for some fresh air and sunshine. When she finally returned to the room some additional exercises were done with her while she remained in the chair.

Maria and I also did another exercise with her that involves one of us climbing on the end of her bed, then we press her feet against our chest and bend her legs while we proceed to push her knees to her chest. We were advised NOT to look at her face while doing this... Let's just say it doesn't feel good to her but the stretching is very important for her back. Maria and I also gave her some additional arm, hand and shoulder stretching this afternoon.

Tori slept once again without the trach button plug in because she is much more comfortable when it is out for the time being. The suctionings continued to occur all night and early this morning and her lungs appeared to be very clean but she still had difficulty when the plug was inserted. It was finally determined that Tori's trach button extended to far into her throat and it was actually blocking some of the airflow. So an extention was added to the trach button which extended it outward a bit more. Tori then responded positively when the plug was used. We are removing the plug at night and using humidified air so we can easily clean her up after she coughs. All that is needed is a wipe afterward which is much better than using a suction catheter on her...

Tori's Myoclonus is still present and the Valproic Acid levels they measured yesterday still show a 50 level... So we increased the Valproate once again to get the levels to the desired 80-100 range. I don't really want to wait until next Tuesday for another set of results so we will get another blood test within the next few days to check the Valproic Acid range.

I'll close by announcing that a new line of candles bearing Tori's beautiful image will be available very shortly on this site. The candle creators are our kind and caring new friends at For Every Body and they have also included a link to this site on their company homepage. Here is the For Every Body site and the candles will be also be available at the University Mall For Every Body store as well. Thank you so much guys!!

Until tomorrow,

-Tim

Hey all,

Tori's sleep cycles seem to be back in line as she slept from about 10:30pm Monday night until 8:30am this morning. She only required one Valium dose which was given to her just prior to her falling asleep. She slept right through all of her scheduled, every 2 hour body repositions as well.

The speech therapist arrived around 9:00am and Tori responded by wanting to take a nap already... She was really in sleeping mood today even with her great nights rest. The speech therapist even tried Dr. Pepper to get her to wake up but Tori was just not having anything to do with it this morning. The therapist did return in the afternoon and had much more luck with the cherry suckers and pixi stick sugar candy. She tried a lemon today as well. Tori does seem to react to the flavors when she eventually swallows.

We pulled the plug out of the trach button last night and put a mask pushing humidified air over it while Tori slept last night. This was done to give her a rest after being buttoned up all day. This morning when we tried to plug the trach button again Tori had alot of difficulty in breathing through her mouth. Her blood oxygen level quickly went from 98 to 82 and definitely was having problems with it so we kept it out most of the day. When Dr. Vickroy and the respiratory technician examined her in the afternoon they came to the conclusion that she just had too much secretions and Phlegm in her lungs to get a strong enough airflow. Tori has been coughing out quite a bit of it but now she will get scheduled suctionings every 4 hours and we will try again in the morning. She does NOT have a known Pneumonia or anything like that and her lung x-rays look pretty good. We will see what happens tomorrow.

I worked with the physical therapist today and we sat Tori in a standard chair. Then we leaned her over to stretch her back and watch her try and bring her head, neck and upper back to a vertical position. She tries so hard!! She can get her neck up and hold it for 5-10 seconds before she needs rest. The effort is definitely there and now we just need to keep repeating it to get her strength built up. We then placed her in her wheel chair where she sat next to me and viewed picture slideshows and dance videos with me for an hour and a half. She was also calm and attentive the entire time. They also had her raise her arms while she was in the chair and again she made great efforts.

We spent the rest of the afternoon moving from room 807 to room 904. It's amazing how much stuff we have in her room... So she is now in the center wing of HSH which is intended to be much more quiet than the other wings. There are only 6 rooms and all of the patients have similar injuries or needs. We are expected to hear much less of the room bells that were going almost constantly in the other location. Please take note of this all of you visitors out there.

Alright, Maria is watching Tori tonight and I think she just wrapped up dinner with Guy and Sophie. Maybe Tori can start a positive sleeping habit streak tonight by sleeping exactly how she did last night. We can all only hope!!

Thanks,
-Tim

Good evening,

Tori ended up sleeping very well for Sophie and Maria on Sunday night. The Valium dosage was the same as the previous night and Tori had one at 11:00pm and about 4:30am in the morning. She then slept in until 7:30am or so.

The physical therapist came in first thing this morning and ran Tori through her stretching routine and immediately afterward Dr. Vickroy and respiratory technician Tony were there to remove her trach and insert the olympic trach button. The trach button is essentially a small plastic pipe that has a removable plug. You can remove the plug and she breathes just as she did before when the trach was in. Keeping the plug in causes all of her breathing to go normally through her throat and mouth. The procedure went smoothly although Tori coughed during it and got Dr. Vickroy with some serious Phlegm. She now has the nickname 'Volcano' and everyone is cautious around her when she is about to cough :-)

Various sounds came through Tori's mouth after the trach button was placed. Most of them were gurgles or a little humming. When she is agitated more noise is present as well. She went all day without her bite guard and is continuing to explore her mouth with her tongue. Hopefully she will tie it all together soon and really start making some sounds!!

Tori had more taste tests with the speech therapist today including a cherry sucker which Tori enjoyed much more than the orange one a few days ago. She also had some Diet Coke today!! No, I didn't give it to her it really was the speech therapist and Tori even swallowed on command. I'm sure it won't be long before we can use her favorite Starbucks Frappuccino instead!! ;-)

Kourtney finally broke her jinx today as well!! She arrived with her aunt today and spent some awake time with Tori. We even placed her in her wheelchair and Kourtney got to drive her around the HSH for a while. She also mentioned she was beginning her automobile driving classes just before she ran Tori's leg slightly into a wall... Get off the roads everyone!! ;-) Just kidding you there Kourtney!! We love you!!

Amber and her mother also came afterward and Tori just calmly stared at Amber for about 25 minutes or so. I'm not sure if it was Amber's orange shirt or just her but Tori was very drawn to Amber tonight. Thanks for coming up Amber and I want to welcome all other friends of Tori's to please continue to visit. In fact, one of Tori's therapies involves her recognition of family and friends so if any of you come up for a visit please bring a 5X7 photo so we can use it in her therapy.

Guy also came up tonight and we enjoyed an Outback take out dinner right in Tori's room. Tori cooperated very well and actually let us eat in peace and we promised her some steak in the very near future :-) I think I'll close on that tonight and Tori is sound asleep as I'm wrapping up here. Now if she can only keep it up for say 8 hours straight or so...

Thanks everyone!!

-Tim

Hello again,

Tori bucked her recent non sleeping trend Saturday night by sleeping from 11:00pm until 4:00am then from 5:30am until 9:00am. She spent that hour and a half up but then went to sleep again. Not quite yet where we want it but closer none the less. I did have to use a couple of Valium doses to help her sleep as well.

Tori's Myoclonus was far better today due to the increased Valproate which we are now giving her. The new Valproic Acid levels in her blood will not be known until Tuesday of next week.

I also finally got Tori into her wheelchair today and we toured the entire HSH for an hour!! She did very, very well in the wheelchair today. We went down every hallway and into every room we could. We also viewed all of the pictures we possibly could and Tori demonstrated complete turning of her head as she needed to. At one point we passed a full length mirror so I stopped to see how Tori would react. She looked at both of us in the mirror for several minutes and there was no negative response or agitation from her. I sure do wish I knew what was going on in that beautiful mind of hers... We also went outside to enjoy some fresh air and we are now planning on at least one wheelchair ride a day if possible.

Tori also had many more visitors today including the DePalma's, the Hess family and friends, neighbors Mike and Linda and their daughter, and of course Guy and Sophie!! Sophie is actually spending the night with Maria at the hospital tonight. Good luck ladies!! :-) Tori interacted very well with all of her visitors today. I was repeatedly told that her awareness levels and ability to track are the best many of them had seen and it is true. She is much more aware of those around her. We have been letting her go without the bite guard as much as possible and we have been watching her tongue closely. She is putting it in very different positions inside her mouth and we don't understand why. She has also mastered jarring the bite guard out of her mouth pretty much at will... So we now put a little dental adhesive on it and she is yet to remove it.

Hey all,

Maria and I spent Friday night with Tori so she decided to stay up with us ALL night to celebrate... She did not sleep at all and we tried several doses of Valium throughout the night in failed attempts to help her. We ended up instructing the nurse to give her Dilaudid at 6:30am and it put her to sleep immediately. Tori was ready and trying to sleep but she had some large Myoclonus tremors occurring in her legs... She could never get comfortable enough to sleep. We haven't really seen any Myoclonic activity during the last couple of weeks so it was surprising to us. So today I asked Dr. Vickroy to compare her current medications to those given at PCMC and see if we are using generic forms of them now. That is one possibility but then I asked to see what Tori's Valproic Acid levels were in her blood. The answer of 50 is probably a much more likely cause of the Myoclonus. Her level should be between 80-100 so a countering dose of Valproate was given this morning and her standard dosage amounts were upped as well. Dr. Vickroy indicated that ones liver will automatically try and lower the level when it is high and this is presumably what happened to Tori since her dosages have been the same for some time.

We let Tori sleep until 12:30pm or so then the therapists got busy again. Today the occupational and speech therapists went through some more tests and exercises. Tomorrow the physical therapist will have her turn. Tori then took another nap from 3:00pm until 6:00pm. She is now watching me type this update and she is wide awake... I need Kourtney and Michelle to come visit tonight because it always seems Tori falls right asleep when they arrive ;-) It happened again when they visited today but we are hoping that sometime in the near future they will catch her in an awake state.