Tim Schmanski's blog

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

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

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

More updates later!!

-Tim

Hi everyone,

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

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

Hello again,

Tori had another mixed day today - some good items and some bad items. I would like to start with the good tonight and state that Tori went 31 HOURS straight completely off the respirator over last night and today!! Great job Tori!! She is also now trying to actually sit up in her bed and today while her and I were watching the "Incredibles" I actually had to reach over with my arm and stop her from tipping forward... No more high sitting positions for Tori unless she is fully supervised for sure. That was my lesson learned for the day. She was aware and awake just like we have seen in the past and she also had a another nice sponge bath and shampoo again today. She really enjoys the shampooing with all of the head scratches and massages!! :-)

As far as the bad items go... Tori had another Myoclonus episode... I was present in the room when it started at 5:00pm and I had the nurse start with an immediate dose of Ativan primarliy because it was not near the extent of Saturday's episodes. The episodes continued to get worse and rapidly more frequent for the next 8 minutes and Tori's heartrate zoomed to 170 Beats per Minute. She was then uncontrollable, biting her lip, red faced and tossing her arms around so we had to go straight to the Haldol... It took about 45 total minutes before she was asleep. Much better than Saturday's two hour episode but none the less frustrating to witness again. So even without the Ritalin she is still experiencing the Myoclonus so there will be at least two to three more days here in the PICU... We are meeting with the neurologist very early tomorrow so both Maria and I are spending the night.

The PICU Doctors have now doubled her Clonidine through a new patch so we will test that dosage again over the next couple of days. I really, really wish this was more of an exact science but it unfortunately isn't...

Very thankfully, Tori had an uneventful, peaceful and restful day without ANY Myoclonus activity. This was a far cry from the events yesterday afternoon and evening. Tori was also NOT given any additional drugs outside of the standard set of Melatonin, Clonidine, and Valproate. She was given some Tylenol and Codine for pain relief throughout the day since every muscle in her body was extremely sore after being tensed up for two hours straight yesterday...

I was very fired up this morning when I awoke at the hospital and since some of the PICU doctors actually visit this site, I won't say that I TOTALLY ran their daily meeting in Tori's room but it was pretty darn close. I basically set the precedence that Tori's Myoclonus treatment will NOT be in reactive mode anymore and that it would be in full proactive mode moving forward. If I or anyone else begins to see the onset of Myoclonus there WILL be some fast action. No more Ativan for 30 minutes, more Ativan for 30 minutes, some Clonidine for 30 minutes, then finally totally paralyize her with Haldol... Not going to happen again!! I've seen that procedure twice and I already know it doesn't work and it surely isn't healthy for Tori. There must be more reasoning and thought behind the treatment whether that means more Clonidine, more Valproate or bringing back Keppra. I also requested a meeting with a neurologist on Monday to reassess Tori and the drugs that are being administered.

The doctor's final thoughts on yesterdays fiasco were that the Clonidine patch placed on Tori did not saturate her system quickly enough to prevent the Myoclonus. The patch is designed to provide one weeks worth of steady Clonidine into Tori's body. The Ritalin was given because there were no Myoclonus signs at that point but about one to two hours afterward, the Myoclonus went into full gear and the Ritalin kicked in as well. Not a good combination... We will now hold on all Ritalin or anything like it until there is NO Myoclonus activity for two to three days straight. When the Ritalin or equivalent is given again it will be in a very minute quantity.

What a difference a day can make... Saturday started great as I mentioned in my morning update but as the day progressed she had some trouble as Guy portrayed in his mid-day update. I also spent the night in Tori's room again.

All I can say is the doctors and neurologists here are going to have to nail down the exact drugs she needs before she leaves this place. And I expect to see her calm and without any of the Myoclonus activity for at least two or three days straight before we go. I can't imagine what it would have been like if she had this happen in a health care center where there are no permanent doctors on call... It CANNOT HAPPEN at a place like that!!

Tori is so very, very physically strong. Maria, Grandpa Schmanski and I did our very best to prevent her from hurting herself and us during her extreme episode yesterday afternoon. She ws pulling her entire body up just by her arms in our hands. She was also very angry and her face turned beet red and she was sweating profusely. She fought like this for a FULL two hours before they pumped enough drugs into her to get her to sleep. She basically ran a marathon during the afternoon...

We can also now tell exactly when the Myoclonus is setting in. The tremors in her feet typically start at 3-5 minutes apart and eventually get to 1-5 seconds apart in 30 minutes or so. At that point she is very much in pain and uncomfortable... If the drugs are initiated at the onset as I would like the episode would be not near as bad but there are delays unfortunately in getting the drugs quickly which is frustrating. I don't wait a second anymore in finding a doctor as soon as I see the initial signs of an episode. Then there are the drugs!! What didn't they give her yesterday... Lot's of Ativan, Haldol, Benadryl, Melatonin and more Clonidine. The standard Valproate was given as well. Again, the right combination needs to be found very soon to prevent episodes like this all together. The Ritalin factor in all of this was the main issue and it without question will not be given to her for a while...

Tori actually slept solidly from 10:00pm last night until 9:30am this morning!! She hardly even noticed as they repositioned her throughout the night. She is awake, alert and feeling comfortable again this morning.

The Clonidine and Clonidine patch seem to be working as we have NOT seen any of the Myoclonus activity. They have also decided to give Tori a dose of Ritalin today at noon. I will be watching her very closely this afternoon.

When the Physical Therapist came in this morning and told Tori to move her fingers and hand she actually did it!! She definitely seems to understand commands at times and can act on them and I have seen this in other instances. Of course when she tried to have her do it again Tori wouldn't... That stubborn old Tori was showing up again!! ;-)

That is all for now!!

-Tim

I am typing tonights update within the hospital as it is my turn for a sleep over with Tori. Tori is currently in one of the few rooms with a couch to sleep on so it is not that bad.

Tori flat out struggled to go to sleep today as my early morning update and afternoon update indicated. At about 4:00pm or so we started to see some symptoms why. Tori would wince with discomfort and pain about every 5-10 minutes and we couldn't figure it out. She would tighten her arms and hands and bring them to her chest each time while her face grimaced in pain. Between 6:00pm and 9:00pm the intervals were more like 1-3 minutes and we finally began to notice the stiffening and shaking in her feet and legs. She was just hurting real bad during the episodes and we believe it is Myoclonus related again. The Keppra is surely out of her system at this point so the doctors gave her some Clonidine and a Clonidine patch as well. She also recieved some sleep inducers because she has been awake for over 40 hours an is totally exhausted. She finally went to sleep at 10:00pm tonight. I will be sleeping beside her tonight and will be monitoring her closely.

There were plenty of good things today as I noted in the earlier updates. Tori did go a full 10 hours off the respirator and did awesome!!

Outside of that, Maria and I visited the Health South Hospital in Sandy again and have initiated Tori's move to that facility. It is our best interum option at this point. It will probably take place Monday or Tuesday of next week depending on whether Tori is completely stable or not.

Alright, back to the room for me and I'll be providing updates as I can during the weekend.

Thank you all and good night.

-Tim

Tori is refusing to go to sleep today... She was awake for most of night as I mentioned in my early morning update. She is yawning quite a bit and will close her eyes only for a minute or two. Hopefully she has zonked while I'm typing this update... We have also NOT seen any more heart rate drops since this mornings and we are hopeful that the removal of the Beta Blockers will resolve this issue.

Tori had Meagan, Missy, Caitlyn and Alexia from the dance team visit her today and she was very excited!! She had BIG grins and smiles throughout the visit and she was actually turning her whole head consistently from side to side to see the girls on both sides of the bed. They also brought her a NYC T-shirt which had written messages from all of the dance team on it. Maria and I read them all and we love those girls soooo much!!

Tori was also placed in a special, practice wheel chair to prepare her for the custom one which is being built. She spent about ten minutes in it and did pretty well. Again, we cannot wait to wheel her out of that room for a while!!

Another action we have seen from Tori today is her moving her entire hand and arm up to her throat then all the way down until her hand is by her side. She has done this in both directions and it demonstrates that she at least has her full range of motion.

Ok, thats it for now - time to go back and see if she is sleeping or not.

Thanks!!

-Tim

Well, I fore warned everyone in yesterdays update that Tori was beginning to try and use her new found arm and hand strength and coordination. Maria just called me and last night she successfully ripped her respirator and part of her Trach from her mouth twice and had the nurses scrambling each time... Maria also said Tori would not go to sleep during the night and that her heart rate did drop dramatically again at a couple of points. She is speaking with the doctors right now and I am heading up to the hospital. I will post any additional information when I can.

Thanks,
-Tim

Good evening,

Tori had another great night of sleep through Wednesday evening and Thursday morning. Her sleep cycles seem to have returned to more normal hours and this is truly a benefit for us. Today she acted just as she has during the past couple of days. She was very awake, active, and alert and she interacted with many different people today. Smiles were once again abundant!! She was awake from 8:30am until 5:30pm, she then had a nap until 6:45pm and was still up when I left the hospital at 10:15pm.

Tori had a few of her dance friends visit her today. Kourtney, her mother Michelle and Nicole came in and gave Tori all of the juicy details of the NYC trip they just returned from. Tori was just glowing and smiling through the whole conversation!! We truly believe the stimuli provided by hearing and seeing various people throughout the day is greatly helping Tori. Tori even responds to the doctors and nurses who visit her and as Cory, one of our favorite nurses, pointed out - Tori seems to be more attentive and responsive to the guys... Lucky for me I guess... :-)

Tori demonstrated a few new tricks for us today. She no longer has the 'fish hook' type grip I mentioned in yesterdays update. She now has a full blown, grab your hand hard grip!! She uses it quite frequently especially if she coughs at all. She has also been using the newly found grip to get a hold of her breathing apparatus at times so she really has to be watched at this point. I still can't quite get it on command but I think it is close. We also noticed Tori several times today turning her head completely from one side to the other to look at something. Normally she will just roll her eyes to the sides as far as she can go. Another new observation is that she can completely lift her head and neck off of her pillow just prior to coughing or sneezing. That is her preparation for a cough which will propel mucus across the room so everyone typically takes cover or grabs a kleneex to cover the Trach as fast as possible. Her swallowing is also improving and whenever she gets a mouthful of saliva we have been telling her to just swallow and she seems to respond to it most of the time. I think that is because she absolutely hates when the suction wand goes down her throat...