Tim Schmanski's blog

Happy Thanksgiving everyone!!

Maria, Whitney, Brendan and I made it to the HSH just after 11:00am this morning to find Tori and Guy somewhat resting after their long night. I've included Guy's update of last night and today because he details exactly what happens when things are going BAD in Tori's care...

I arrived at the HSH at 6:00pm tonight after spending Thanksgiving dinner up at TJ and Lorrie's house in South Weber. The food and company was great and we had a good time but honestly, there was a huge void in the celebration with Tori missing... Everyone felt it and no words needed to be said. She was greatly missed today but building her "Dancer's" Festival of Trees tree helped everyone keep Tori positively in their thoughts. I will post some pictures of the beautiful and inspiring tree when it is completely finished and I'm quite sure it will touch many of you.

After Guy and Sophie left Tori napped for a couple of hours before I gave her a 9:00pm bath. Her anxiety and trembling was very bad while she was in the tub at one point she had an apparent seizure for about 10 seconds until I sprayed the warm water on her head. When it was over, you could tell it scared Tori but she was completely calm without ANY trembling after that point. It was interesting to witness but I can't say that I would like to see it happen again...

Tori is sleeping VERY SOUNDLY right now with a Heart Rate of 95 beats per minute and a blood oxygen level of 95%. I don't think she went below 120 on her Heart Rate the whole time Guy and Sophie watched her... Thanks again Guy and Sophie for taking care of Tori for a while. We greatly appreciate it and both of you of course!! :-)

Good night everyone,

-Tim

Guy start:

Happy Turkey Day everyone,

Hopefully by now most of you are very close to consume your freshly carved dinner.

Tim, Maria, Brendan and Whitney stopped by earlier on their way to TJ's house. They are there as I am writing this hopefully enjoying themselves.

Sophie was kind enough enough to come back very early this morning to keep ToRi and I company. She took a detour via the grocery store to buy breakfast and the newspaper (Sales ads). There was no point in both Sophie and I staying up here last night so she went back to sleep in our bed. Or sleep period I should say.

Tori and I didn't really find that in our portfolio of activities last night. According to Tori's nurse Jessica, she was already pretty agitated at 3pm when she started her shift. Basically, between that time and 9am this morning she didn't really rest.

After her 10pm medications, Sophie was still here to witness how restless Tori was. We still decided it was wiser for one of us to go home and get some sleep. It was a great idea since I was able to 'snooze' a little bit with Tori this early afternoon while Sophie was watching after us.

I figured I was going to keep these to myself but there is no reason not to share them (expect for the fact that I am not going to review them and send them as is). For some reason, I felt compelled to document my night with Tori so that I could remember how it was like (maybe others can also understand the troubles she is still fighting with).

1am -- Tori has still not really slept tonight

She is showing signs of anxiety. For some reason, she would not keep her eyes closed for more than 60 seconds. I wonder what her valproic acid level is because she is shaking quite a bit and I saw her eyes 'wobble' twice. She would randomly start crying and whether you stand by her, stay way, talk to her, hold her and or caress her head or back, there is nothing to calm her down. Placed the oximeter probe on her right foot using my clean sock because the hand simply doesn't work today.

1:15am -- She is also posterizing quite a bit - there is no position in which her arms seem comfortable to her. Rang the bell, we sucked out from her stomach and tried to calm her down with the nurse, 2 aids and the respiratory technician (5 of us watching over her).

1:30am -- Decided to call Tim. We could not get Tori to settle down so decided to call. Based on Nichole suggestion, we wanted to try a full dose of Dilaudin and a dose of nausea control medicine. Tin was ok with that. She was shaking a lot and they could not take her heart rate or blood pressure reliably. Hopefully this will do the trick or I will have to call Tim again at 2:30am.

2am -- Tori might be showing some signs of calming down. Per Jay's suggestion - we started 'Cinderella Story' again for her. She is kind of watching and settling down (hopefully).

2:30am -- we are just shy of the half hour and Tori is still not sleeping. Despite sleeping quite a bit yesterday - I am totally beat right now. Seeing her like that for the last 8 hours is just really difficult. Somewhat I was preparing myself for that; somehow I knew she wasn't going to be feeling well tonight.

We are going to try to both go to sleep. I am going to lay down and see if that motivates her to go to bed as well.

2:35 - 2:45 -- Tori is sleeping. HR is still around 126 but she is sleeping.

2:45am -- Nichole came in to unplug her tube and put the feeds back on. Tori didn’t really wake up this time.

4:50am -- Tori slept all the way from 2:45am until now. She did wake up crying for a few seconds and so I pushed the help button wanting for them to come in and help change/reposition her.

5:15am -- They are done with her and of course she is a little agitated. Hopefully she will settle down pretty soon. She sure cries a lot louder than used to. HR is averaging 141.

5:30am -- She is settling down. Hopefully will fall asleep for a while again.

5:45am -- She is agitated again, she probably slept a little over the last 15 minutes but now again she is not feeling good. Rang the bell for help and Jay concurs that she is having a 'particularly rough night'.

6:05am -- She is not able to get back to sleep on her own. Nichole is giving her a Valium to hopefully help her through the next few hours. Turned a movie back on until the Valium kicks in.

7:10am -- Tori slept again for an hour (HR 120) before Nichole came in to unplug her tube. That again woke her up and she is crying. Her heart rate is not as high this time HR 128 so I hope she can go back to sleep quicker this time.

7:10am - 9:00am -- Tori continued to sleep on and off. I, she, we were able to calm down quicker and more easily a few times during that time.

9:00am -- We are up and kicking. They are getting ready to change her dressings and her tube connector leaked so they are going to change her again. Sophie just got here.

This was what I wrote during the night. Tori slept a little bit this morning. She didn’t wake up for OT at 9:30am or PT at 10:30. Stacey came back at noon and there she was more willing to participate a little bit. Tori and I both slept a little bit after Maria left.

It’s now 3:43pm and she is napping some more.

Again, happy Thanksgiving to you all,
-Guy

Guy end

Hello everyone,

Tori slept phenomenally well Tuesday night and into Wednesday morning. She finally woke up around 10:00am or so this morning and Cheryl was working with her an hour or so later.

Cheryl feed Tori some pudding and I gave her several, partial straw fillings of coffee today to provide an additional taste test for her. She enjoyed them both. Enrique and Amanda then arrived for Tori's PT session. Enrique started with some leg stretching and sitting afterward. Then he had Tori standing for probably 4-5 separate instances. Tori also did some simulated walking before she was finally put back into her bed to rest.

Staci came in next for Tori's swallow study and we loaded her into her wheelchair and headed to the radiology room. We had barium laced apple juice and chocolate pudding. We started with the liquid first because it is actually the most challenging to control when swallowing. That is because it runs straight to the back of the throat on it's own of course. Tori did NOT pass the liquid test during the last swallow study but I'm happy to report she did very well this time!! Tori handled half tablespoons of the laced apple juice just fine and swallowed nicely. A full tablespoon turned out to be a bit too much at this point but she reacted in the correct fashion by just coughing it out rather than aspirating it. We then gave her a couple of mid to full tablespoons of pudding and watched on the x-ray as she swallowed it all perfectly. Staci was very happy with today's results just as we were :-)

Cheryl came back again later in the afternoon and gave Tori some vegetable soup broth and grape juice. We are going to try and keep Tori nibbling on treats as much as we possibly can. This will further test Tori's stomach and digestive system and as I mentioned yesterday we are keeping her stomach clamped now for 4 hour periods at a time. We still didn't give Tori a direct feed into her stomach yet... We will try again to do this during the next couple of days I guess.

After Maria and I left Tori decided to get a little bit agitated unfortunately... This caused her to generate a little more bilious than usual and after some initial dilaudid then some valium Tori finally calmed down. Guy and Sophie are watching her tonight and I believe she is finally sleeping as I am typing this. Tori had a very busy day today and didn't nap at all so I'm pretty sure she will sleep well tonight. I'm sure Guy will provide a nice update tomorrow sometime.

I'll close by wishing everyone a Happy Thanksgiving for tomorrow!! :-) And thank you all so much for the continued prayers and support for Tori and our family.

Sincerely,

-Tim, Maria, Tori, Whitney and Brendan

Hello,

Tori and Maria had another good night of rest. It would take Tori a little while to settle down again after repositioning and changing but she eventually would.

We have noticed a few interesting actions whenever Tori coughs. Sometimes she will throw in a great big yawn at the end of the coughing and tonight I've seen her sneeze a few times during coughing. We don't really know what it means but it is different. Tori will be having another swallow study done tomorrow to see how she is improving. I am betting it will be much better than before because she is definitely eating and swallowing a wide variety of food types and is consuming more and more each day. She is also drinking more and more as well. Speaking of eating, Tori had some chocolate pudding today and a new, custom made snack we are calling an 'orange smoothie'. It consists of orange juice, lemon extract, some pixy stick sugar candy, corn starch and ice. Oh yes, I tasted it of course and it was just like eating lemon meringue which isn't too bad :-) Tori ate ALOT of it today!!

Tori's bilious output from her stomach hit a high point of about 175ml late last night and it has hardly drained at all since then. So the usual after the procedure drainage appears to be complete. We are now clamping Tori's drain for 4 hour stretches of time throughout the day. We are trying to remove the need to drain her stomach of course and she is handling it well so far. I am hoping to finally give her some of the feeds into her stomach tomorrow.

Tori also had a great OT and PT workout today by sitting, standing and being upright in the standing table for a record 22 minutes!! Again, this is a very hard exercise for her and she is sweating profusely afterward. She is always ready to rest when she is finished as well. Tori also needed ibuprofen and tylenol several times today as she seemed to be hurting a bit.

Tonight Tori had another, relaxing bath and enjoyed the 'Ice Princess' once again before finally falling asleep at 10:30pm or so. And I will close tonight's update on that note.

Thank you,

-Tim

Hello again,

Tori rested fairly well Sunday night and I called the PCMC first thing in the morning and arranged a 10:00am procedure time. So the ambulance showed up at the HSH just after 9:00am and we were on our way once again.

Tori was given a full dose of valium before we left and that turned out to be a good thing because she had to wait in the ambulance stretcher until 11:15am or so before we got her into the radiology room to get going. Luckily she just slept during that wait time. Once we were inside, the radiologists Peter and Greg determined the previous GJ-Tube was too damaged to use once again. The 'balloon disk' which fills with air inside of Tori's stomach was pretty beaten up so they went with another full GJ-Tube replacement to which Tori had to be sedated again. They ended up finishing around 12:30pm and we arrived back at the HSH around 1:30pm in the afternoon. Feeds and TPN were started immediately though at lower levels. Tori's stomach didn't generate nearly the amount of bilious as it has in the past after this procedure.

Tori then spent the afternoon very calm, awake and alert in her bed. Toni and Gary came to visit and Guy and Sophie as well. Tori just seemed to listen to the conversations at hand. Cheryl fed Tori some microwaved peanut butter and Tori enjoyed it very much!! She also drank alot of water by having it dropped into her mouth with a straw. Staci came in later in the afternoon for some ST and gave Tori more chocolate whipped cream, 'grape slushie' and suckers.

Grandma Schmanski watched Tori this evening while Maria, Guy, Sophie and Whitney went to the Utah Jazz game. Whitney and the rest of the Dance Club performed at halftime and they all did GREAT as usual!! Whitney was even on the BIG SCREEN in the arena for a while as she danced. When Tori finally realized we left she was very unhappy and became agitated. Some of the pain medications probably wore off as well so they had to give her more valium and even some dilaudid to calm her. In reality, she didn't calm down until 'CSI' came on the TV. She was given a late bath after 'CSI' and was still fairly calm when we all left just after 10:00pm tonight. Maria is spending the night with her tonight.

Thanks again everyone,

-Tim

Hello there,

Tori had a somewhat restful night of sleep Saturday night but Maria didn't fare as well since there were pump alarm issues once again... Tori ended up sleeping in well into the morning but she was basically awake for the entire day today. She also went to bed tonight at 10:00pm or so and I'm happy to report that she sleeping very, very soundly at this moment.

She very calmly watched 'A Cinderella Story' again today and I was able to feed her about 6 ounces of applesauce and some diet coke as well. She also drank quite a bit of water today via her sponges and used her 'thumbs up' signal pretty consistently when she wanted some more. I also positioned Tori in her bed today so she was sitting up as straight as possible with two pillows behind her back. This made it so she barely had to move forward to be completely sitting up on her own and she did wonderful at it today!! She keep her head and neck off of the pillows and balanced her body with her trunk. I kept her in this position for over an hour and throughout it Tori entertained Ryan and Melanie who visited today. She also demonstrated for Grandpa and Grandma Schmanski as well.

I'll close today with some good news and bad news... First the good news - Tori weighed in today at 98lbs!! So she has gained a full 10lbs since her low weight of 88lbs. Now for the bad news - Tori's GJ-Tube came out from her stomach once again this evening... The small, inflatable disk came out from the inside of her stomach to the outside just as it did several weeks ago. We are not sure if it pulled the J-Tube out of position as well but we had to stop the feeds just in case. All of her medications tonight will be given through the J-Tube because it is either still in position or inside her stomach. So another ambulance ride and visit to the PCMC is on the agenda for tomorrow morning once again... Hopefully it will be quick again and we will be back at the HSH within a few hours. See ya tomorrow Peter, Darin and the gang!!

Thanks everyone for the continued thoughts, prayers and support,

-Tim

Hello again,

Tori finally had a full night of restful sleep!! Repositionings also had no effect on her during Friday night and we are thankful for Grandma Schmanski was able to sleep as well :-) Maria is spending the night with her tonight and we are hoping she still has some sleep left in her...

Tori actually ended up sleeping for most of the day today. We believe she must have been recovering for a couple of nights when she had minimal sleep. When she was awake she was in a good demeanor with no agitation or tremors. She slept through her PT and OT session today so they were able to get in some great stretching and range of motion exercises. Later in the afternoon she was awake for her ST session where she enjoyed some more chocolate whipped cream. I also fed her another 4 ounce cup of applesauce this afternoon combined with some sucker sampling and ALOT of water via her mouth sponges.

Tori also watched 'Nemo' this afternoon with Tori while Maria and Whitney had a nap. She finished the low key day off with a nice, hot and extended bath. We let her have a little extra soak time this evening :-) Afterward, Brendan got to rub pear smelling lotion all over Tori's legs. He just loves to give Tori that particular treatment :-) Whitney finished Tori's hair by blow drying it and placing it in a nice pony tail.

Alright, that is the shirt report for tonight and I will definitely post the Studio One benefit concert details and pictures tomorrow.

Thanks again,

-Tim, Maria, Tori, Whitney and Brendan

Hi,

Tori had a very inconsistent night of sleep during Thursday evening and early Friday morning. She could not get comfortable after her repositionings and she also had to have a couple of doses of valium to help her. We have also noticed an increased trembling in her limbs and research indicates that this is a side effect of Lexapro. Dr. Vickroy confirmed this so we reduced Tori's does from 10ml to 5ml once a day in the morning. Nausea and diarrhea are other side effects so we are countering that with some Imodium AD. Typically, patients will adapt to these side effects so we are going to give Tori a few more days on the Lexapro.

Tori's OT and PT session consisted of the normal stretching routine and Tori 'almost' touched her toes with her arms extended in a sitting position. She also did some sit ups with the therapists providing about 75% of the effort and Tori providing the other 25%. Afterward, peanut butter was the reward and Tori enjoyed it very much. Pineapple and watermelon suckers were next followed by some more 'grape slushie'. Tori actually ate quite well today :-)

Tori's stomach feeding will begin tomorrow as we decided to give her another day of rest. Grandma Schmanski is spending the night with Tori so Maria and I could attend the Studio One benefit concert which was an OUTSTANDING SUCCESS!! I will post pictures and a recap of this even tomorrow as I am really ready for bed after staying up with Tori late Thursday evening... I do want to quickly thank Bree and ALL of the Studio One dancers for their performance tonight and ALL of those who attended as well. The auditorium was filled!! It truly warms our hearts to hear all of the stories on how Tori has touched so many of you and your families.

Thank you ALL so much,

-Tim, Maria, Tori, Whitney and Brendan

Hello all,

Tori and Maria both had a great night of sleep Wednesday night so Tori was well rested for therapy this morning. Tori has been pretty much sleeping in until her 11:00am session almost everyday. She might wake up sooner for small amount of time but will typically fall asleep again.

Tori's OT and PT session consisted of the normal stretching routine followed by some sitting and standing positions. Tori also had some Salisbury steak broth and chocolate whipped cream during her ST session today. She did not care for the apple sauce and sour pixy stick combination at all...

Tori's bilious output from her stomach has returned to normal amounts and her J-Tube feeding rate is back to 100ml per hour. Tomorrow we will begin some small, 10ml to 20ml total feeds into her stomach at specific times. Her stomach down drain will then be plugged for at least 4 hours afterward. Hopefully Tori will tolerate these initial tests so we can move ahead and get her digestive system back to normal once again.

Tori concluded her day with another hot bath and her favorite TV show 'CSI - Las Vegas'. And I believe that is all there is to update on for today. I also want to mention once again that the Studio One Benefit Concert for Tori is taking place tomorrow evening and I hope to see and meet many of you there. I will also provide pictures and a great recap for all of you who cannot attend.

Thank you,

-Tim

Hello again,

Tori had a late start to sleeping last night but after her 12:30am valium she slept just great until about 10:00am this morning. Her ambulance ride to the PCMC was scheduled at 12:00pm so she was able to have her OT and PT therapy session.

That session consisted of more stretching and sitting and Tori was very vocal throughout the session. We then took the ambulance ride up the street for another J-Tube placement. Darin, Jeff and Laurie were there waiting and the entire procedure took about 30 minutes. The J-Tube placement went very well and clearing the tube past Tori's SMA Syndrome was quick and easy this time!! That is a very positive sign that her recent weight gains are working to resolve the SMA Syndrome. Her feeds were started at a lower rate upon her return to the HSH around 2:45pm and we will probably begin slight stomach feedings for her beginning Friday or Saturday after she recovers a little bit. Typically her stomach will generate alot of bilious for a day or two after a placement procedure.

Tori is definitely improving and looking much better and the radiology team commented on this once again. People who do not see Tori for extended periods of time notice the changes much more than those of us that are with her everyday. And it is of course always great to hear positive comments of this type!! Keep fighting Tori!!

Tori also had her ST session this afternoon and enjoyed some strawberry yogurt and afterward watched another showing of 'Ice Princess'. She is doing well tonight and looking forward to sleeping.

Thanks everyone,

-Tim

Hello,

Tori slept well again Monday night and actually held down her minimal feeds given through the night as well. They took some x-rays this morning that indicated the J-Tube had indeed slipped from it's original position but it was still barely in her small intestine. So most of the feed was going in fine but small amounts were coming back up into her stomach. Actually about 10ml-20ml per hour or so was down drained from her stomach. So overall, Tori did very well with this throughout most of the day. She did have some really bad diarrhea a few times though...

Around 9:00pm or so tonight she became visibly uncomfortable and we found out why when we aspirated or suctioned out all of the contents form her stomach. She had 600ml in there!! That is definitely a stomach full for her... So the J-Tube is almost positively out of her small intestine at this point so we will have to make a trip to the PCMC for another placement as soon as possible. One very positive note to take from this though is that Tori did NOT vomit even with that much in her stomach. That is encouraging to us even though her J-Tube is out again!! We are obviously not ready to give her 100% of feeds through her stomach though but we will aggressively try for at least a 70% J-Tube and 30% G-Tube feeding spread after the placement is completed. Then we will gradually work our way up to the 100% G-Tube feedings we all desire.

Tori's OT and PT sessions today consisted of stretching, sitting and standing with simulated walking as well. Her ST session was very good also and Tori had some more pumpkin pie today. Tori is getting more and more consistent with her 'yes' and 'no' responses. For 'no' she will close her eyes tightly and slightly turn her head to the side. For 'yes' we are getting her to make ANY sort of sound with her voice. We are shooting for a 'yeah' of course and have actually heard that at times but all sounds are fine at this point. Tori can also use her right thumb and give the 'thumbs up' signal for 'yes'. We are all very encouraged by her progress on this front!! :-) I also use cards with numbers or letters on them and have Tori make the correct choice visually. For example, show her a '1' card and '4' card and have her look at the '4'. She just aces this test every time and gets bored with it quickly. I'm sure she thinks this is "Too easy Dad!!" but it's a starting point. Maybe I'll just have to throw some simple math or algebra problems her way and see how she does??

Tori was able to enjoy another showing of 'A Cinderella Story' again tonight and had another enjoyable bath as well. She is watching me complete this update now but appears a little sleepy thankfully. Tori will also be started on the anti-depressant medication Lexapro tomorrow. We will hold off on any cognitive stimulant medications for a few days to see how Tori reacts to the Lexapro first. Alright, I believe that is all for tonight!!

Thank you all once again!!

-Tim