Tim Schmanski's blog

Tori woke up today in good mood after her fairly decent night of sleep. She was given another 'Day at the Spa' treatment by Maria which includes a warm sponge bath, shaving, shampoo and massage and fingernail polish. That put her in a great state for the rest of the day.

In my meeting with Dr. Such-Neibar, one of Tori's therapy and rehabilitation doctors, we dicussed adding Keppra back into Tori's medications once her Valproate (Valproic Acid) levels are between 80-100. When we took Tori off of Keppra originally she seemed to become much more awake and aware so we thought there was a drowsiness downside to the drug. Apparantly this is unfounded so we are going to try it again and reduce the Baclofen if there are positive results. We also discussed Piracetam which is a relatively new drug here in the states though it has been widely used in Europe and Canada. The therapy and rehabilitation doctors here have NO experience with it because it is so new here. We will see how the Keppra path goes but it might be time for some Piracetam experience if all of the positive information I have researched is true.

Tori finally bit down on her lip a bit too hard today and opened a cut or two. She was highly agitated and we didn't want her to do it again so I placed a rolled up piece of cotton between her teeth and lower lip. Bad idea... She eventually freed it and we were lucky enough to get a plastic syringe between her teeth so I could use tweazers to retrieve the cotton. Just before she swallowed it of course... So we tried a bite block next which worked for while until she learned if she opened her mouth real wide it could be freed... Taping it to her cheek was the next idea which failed as well becasue the bite block eventually slipped and Tori cut up her tongue a bit... So we just ended up taking it out and tried to let Tori deal with it and deal with it she did. She learned how to use her tongue to push her lower lip out before clamping her teeth together. Now the real cool part about this is when I ask her to use her tongue on her lip she does it!! She did this 4 times in a row for me. Now if I can just get her to interact in a more positive setting than a cut up mouth... Another positive with this experience is that Tori CAN definitely gag!! She demonstrated it several times during the retrieval process.

Maria and I attended the Dance Attack final session last night in Park City so I am a little behind in Tori's updates. There is actually very little information to report on since Tori slept pretty much ALL day Saturday. Grandpa and Grandma Schmanski stayed at the hospital Friday night and Tori finally went into her deep sleep around 10:30pm. She woke up sporatically throughout Saturday but only for 5-10 minutes at a time.

We have also increased Tori's continuous feed rate to 30 milliliters per hour through her NJ Tube. For her size, Tori should be recieving 80 milliliters per hour of continuous feed and that is our goal. Tori did end up having 3 bowel movements on Saturday which is an indication of progress on the digestive system front.

I have continued in heavily researching post anoxic myoclonus which is also known as Lance-Adams Myoclonus. There is alot of information on this on the internet and this site outlines the medications that seem to help the most. We have increased Tori's Valproate dosage because we want a level between 100-120 in her body at all times. Currently she is at 64. Once this level is hit I would like to reduce the Baclofen and watch Tori's drowsiness levels. I haven't been able to discuss Piracetam with Dr. Gooch, Tori's therapy doctor, but I am hoping to on Monday.

I might as well report on Saturday night activities since I am late on this update. Tori actually slept quite well and we used 2 doses of Valium to get her through the entire night. She did cough up quite a bit of Phlegm last night but the cultures are all still negative for a pneumonia.

Hello all,

Tori ended up NOT sleeping at all Thursday night and early Friday morning and she finally went to sleep today at 5:30pm or so... She was awake for about 34 hours straight and was agitated the most during early Friday morning. During the day today she was relatively calm but she just wouldn't sleep and we tried Valium a few times to help to no avail. She ended up going to sleep on her own.

We also had to put the NJ Tube back into Tori's nose and it runs all the way through her stomach into her small intestine. We began her feeds again through the NJ Tube to bypass her stomach and we are sure hoping that will work for a while. The doctors are still stumped on some of the stomach issues Tori is having.

One of the neurologists who reviewed Tori's EEG data told us it all looks normal and that the spikes presented during one of Tori's rythmic twitches are caused by Post Anoxic Myoclonus. This Web Site provides information on various Myoclonus classifications. This comment seems to describe much of Tori's activities "Frequently myoclonic jerks occur during an active voluntary muscle contraction ("action myoclonus" eg after lack of oxygen to the brain ("Post anoxic myoclonus")". Several other neurologists are supposed to review the EEG dat as well so we'll see what their analysis is.

I will also speak to the therapists on different types of medications to combat the Myoclonus including Piracetam which has offered great results to many people according to my research.

Thanks,
-Tim

Hello all,

I have been starting with Tori's nights in my recent updates because they typically have a direct correlation with how her day will turn out. Tori ended up having another 3 Valium doses after her Wednesday night at 9:30pm Valium and Zanaflex doses. She wasn't quite as restful as the previous nights but she did go into one of her deep sleep states from 6:00am until almost 10:00am this morning.

She awoke and the therapists began their work. The speech therapist used ice water today in Tori's mouth and she didn't really like the coldness on her teeth but she did swallow the water just fine. Next the occupational and physical therapists came in and we sat her up in the bed again. She did well with this exercise just like yesterday.

Immediately following the therapists the Neurology Team entered and said the EEG would be done today rather than Friday. So they glued about 40 probes all over Tori's head and at 1:00pm they began gathering the brain wave data. One could easily see the activity during Tori's rhythmic twitching. Tori gave them various flavors of data throughout the day including no agitation or movement at all, minimal agitation and movement and finally a Thalamic Storm with maximum agitation and movement... The Thalamic Storm occurred this evening and the probes will remain on her head until tomorrow at 1:00pm so we will have a full 24 hour data cycle. They also used a video camera and record Tori through this entire process so her actions can be matched with the EEG data. Hopefully we will have an answer to Tori's twitching condition after everything is evaluated. Perhaps then we can adjust her medications accordingly.

The Botox in Tori's arms seem to be taking effect already since it is much easier to get Tori to relax and move them. We are looking forward to additional progress during the next several days.

Tori started today on a very good note by almost sleeping the entire Tuesday night!! She was given her Zanaflex at 11:00pm Tuesday night from which she slept until 2:00am when she had a coughing episode. We gave her a single dose of Valium at that point then she slept all the way until about 7:30am!! And of course I did as well :-) I'm really liking the Zanaflex at this point but I hope Tori doesn't grow another immunity to it...

The action really began at 9:00am or so when Tori had a bowel movement!! I know some day Tori will read this and come after me but this is important as it shows her digestive system is beginning to operate correctly again. We did have to halt her feeds temporarily again this afternoon because her stomach had some fluid build up which wasn't clearing as fast as we would like. Her stomach contents will be checked again later tonight and if its an acceptable level the feeds will begin again. All of Tori's cultures are still negative so that is great news as well.

Tori was in a very good disposition today with little agitation so we decided with the physical therapists to sit her up in the bed and place her feet on the floor. It went very, very well as Tori attempted to use her muscles to balance herself. She wasn't very successful at it but she was at least making the effort. Practice, practice, practice. She did better when they released her head and she attempted to hold it up. Up and down it went for a minute or so until she became tired. Her arms also seem to relax much better in the seated position probably because they are more difficult to lift all the way to her shoulders. We will now be doing this position much more frequently moving forward.

Tori's primary physical therapy doctors came in next and we decided at that point to get Tori some more Botox!! I got to help them shoot it into her troublesome right bicep and forearm which are always clenched, into her left bicep as well though not early as much as her right, into her right side neck muscles because Tori prefers turning her head to the left and finally her lower back which arches during each one of her twitches. We used the EMG again to position the Botox accurately. Again, the doctors can't seem to agree on the twitches and they are either Clonus related or Dystonia. It was also suggested they could be a form of seizures as well... The EEG is now scheduled for Friday and it will tell us alot as to what the twitches actually are. The EEG equipment will be left on Tori basically all day and we will be providing alot of stimulus during this process as well. The Botox shots did NOT affect her nearly as badly as her legs did a while ago. In fact we prepared for the worst and tried to drug her to sleep immediately after the shots with Valium, Zanaflex and Hydromorphone. They didn't even touch her... But the good news was that she wasn't really agitated or in pain at all. In fact she was more awake and active afterward than we have seen in a long time. Eyes wide open and tracking again, very little agitation, responsive to sounds and sights - it was all pretty good. She stayed like this almost all day until 9:30pm or so when she became really tired and agitated. We ended up giving her Valium and Zanaflex and this time she is out!! She was basically up ALL day so we are hoping for a good night of sleep but in the back of our minds we remember our last Botox episode... Maria, Whitney and I are all spending the night in Tori's room to keep a close watch on her.

In two or three days we should see some great Botox results on Tori. We are all hoping and praying that the greatly reduced stress on her muscles will ease and lower her agitation levels. We shall see.

Thats it for today. All in all a good day except for the temporarily stopped feeds. I think we can call today the third day of three positive days in a row :-)

Thank you all so much!!

The Schmanski's

Hello again,

Tori required only a few doses of Valium late last night and very early this morning because she was given a dose of the Zanaflex which seems to work pretty well on Tori's agitation and twitches. In fact it works so well that today we decided with the Physical Therapists to give it to her regularly in two small doses during the day and a larger dose at 11:00pm or so for sleeping.

We were unable to get the EEG ran today and will try again for tomorrow instead. The Physical Therapists are also seriously considering more Botox for Tori's lower back and biceps to help with her discomfort in those areas. Tori had the full set of therapy movements done this morning and we also placed her in her wheelchair today and went touring for 30 minutes or so. She did very well again with the ride. Tori's cultures have not had any growth so she is still fine in that regard as well.

At 6:00pm Tori went into another deep sleep session with absolutely no movement and low, low vitals and woke up about 9:00pm. We are getting closer and closer to that 10:00pm time we want her to do this at :-)

Other than that it was what I consider another good day for Tori. Her feeds seem to be digesting great but she hasn't had a bowel movement yet even though she is getting medication to help her with this. This is the main issue we are monitoring at this point. Her feeds are still capped at 15 milliliters per hour which isn't too much.

Please continue directing prayers and thoughts to Tori and let hope for three positive days in a row tomorrow.

Thank you all so much,

-Tim

Tori ended up requiring a Valium dose every two hours or so late last night and very early this morning. She continued to have the Myoclonic Jerks throughout this time. They were separated by 5-10 seconds each and at times quit for a few minutes but then they would return. Tori was not really agitated with them but they definitely prevent her from sleeping comfortably and soundly... Tori was also suctioned several times during the night as normal.

She had a fairly active morning and early afternoon as we placed her in her wheelchair for a while and had many visitors come by including Amber, Missy, Caitlyn, Meagan and Courtney. This group of girls came around 2:00pm or so and after about 10 minutes of conversation with Tori, she completely fell asleep!! I told them they bored her into it and to stop by anytime ;-) It was actually just great to witness as there were no drugs involved and she really, really went into a deep sleep all on her own. She was totally relaxed with a 80 beats per minute heart rate and a breathing rate of 15 breaths per minute and absolutely NO MOVEMENT at all!! No Myoclnic Jerks or Dystonia at all. I also firmly believe Tori can control those actions because if I can verbally get her to relax and become unagitiated at all they will go away for periods of time. Now we need to get her to learn how to do this then repeat as needed.

I also spoke to several of Tori's Physical Therapists about the Myoclonic Jerks or Dystonia. Again, they are unsure whether the 'twitches' are associated with either... I had Tori relax at one point to demonstrate her perceived control of them and they suggested running another EEG on Tori when she is having the referred to from here on out 'twitches'... By studying the neurological brain waves during one of the twitching episodes they can make a better diagnosis on the issue. Hopefully that is... Again, for everyone to visualize this, when Tori twitches she basically moves her wrists to her shoulders in a bicep curl type position and her lower back arches to some degree. Her feet and legs may also raise a bit during an episode. The movements all happen simultaneously and can vary in frequency and in force of the movement.

Thank you Guy for the mid-day and evening updates you posted earlier. I don't have too much to add to them other than it was a half good and half bad kind of day...

The first half of the day went very well with the 'Day at the Spa' treatment and the like. Tori then ended up vomiting several times after 3:00pm but with very small amounts each time. She is indeed digesting some of her feeds because not all of it is coming out. She seems to have a fever again tonight and all feeds have stopped until tomorrow. Complete culture samples were also taken to make sure she doesn't have yet another bacteria or virus... We have been scaling up the feed rates from 10 milliliters per hour all the way to 25 milliliters per hour and since we seem to have hit the highest rate we can go now, we will probably drop the rate back down to 15 milliliters per hour or so. Tori handled that rate for quite a while.

Tori has been sleeping fairly well so far tonight but she is needing a Valium every few hours to keep her calm and resting. I'm heading back into her room now and hoping for some more peaceful rest for Tori.

Thank you all again,

-Tim

As Guy reported in his mid-night and early morning update, Tori had another restful night and required only two doses of Valium to keep her soundly sleeping. Thank you so much Tori for giving Guy and Grandma Schmanski a peaceful night as well.

This morning when Maria and I arrived Tori was in the most comfortable and relaxed state we have seen her in for a long, long time. Her arms were loose and resting on her stomach rather than in the normal tight biceps and wrists to the shoulders position. We could easily move her arms and legs around and no resistance was offered by Tori. She was awake and calm as we did this and she did NOT become agitated at all!! Better yet, she wasn't on any anxiety or pain relief medication at the time either. She was just on her standard medications: Baclofen for Spasticity, Propanolol and Clonidine for Thalamic Storms, Valproate and Clonazepam for Myoclonic Jerks or Dystonia. At some point we would even like to trim that list down a bit...

So Tori was in a perfect state for an experiment this morning. We brought in my computer and the "Dance Club Company Showcase June 30, 2005" DVD which we just received and has all 52 dances the company performs at competitions. Maria and I actually attended the Showcase when it was recorded. Earlier this morning, our initial viewing of the DVD brought out many tears for Maria, Whitney and I because there is a moving tribute to Tori at the beginning. We will try and post it to the site for everyone to view as soon as possible. We placed the computer close to Tori and hit play and Tori began watching the DVD. Her heart rate jumped 20 points immediately and her breathing rate increased as well. Her eyes became wide open as she watched the tribute and everyone except Tori cried again... Tori was truly enthralled with the DVD and the numerous dance performances we played for her especially those of which she was originally in. Watching her dances and listening to the music for them definitely stirred her and her arms and legs began to move as she continued to watch. She watched dance after dance and remained relaxed and focused on the screen until we had to stop and get her ready for her PICC Line insertion. We can now hardly wait to try this type of stimulation again!!

Hello again,

Finally!! Tori decided to give herself, Maria and I a much needed GREAT night's sleep last night!! She also only had one dose of Hydromorphone and one dose of Valium at around 11:30pm Thursday evening. She then slept very comfortably and silently until about 8:30am this morning and we did too!! We are hoping for the same result tonight as Guy and Grandma Schmanski are taking a shift while Maria and I head home with Brendan and Whitney. We will hope and pray their night will be as nice as ours was and I prepped the nurses on 'Tori procedures' before we left tonight :-)

Tori's mid section doesn't seem to be causing her nearly as much pain and discomfort as the past few days and we initiated a slow 10 milligram per hour continuous feed around noon and Tori was still holding steady when we left the hospital at 9:00pm tonight. The Antibiotics still seem to be working on her E coli bacteria and on her Pnuemonia since her lungs are sounding much better as well. Tori also had an excellent physical therapy session this morning and her muscle Tone and Spasticity are holding up very well. The physical therapist team also upped her dosage of Baclofen to try and rid Tori of the minimal Myoclonic Jerks or newly diagnosed Dystonia. The physical therapists are unsure of which one it is at this point... Luckily, both conditions are treated with the same types of medications including Baclofen and Botox. Dystonia occurs generally with injuries to the Basal ganglia which is Tori's primary area of brain damage according to her MRI. Again, we believe Tori could be totally calm, comfortable, aware and awake if she didn't have either of them... I also found the following information on the internet concerning Dystonia: