Tim Schmanski's blog

Hello,

Tori slept well Tuesday night and into Wednesday morning. At 11:00am or so the respiratory technician and ICU lead doctor removed her standard trach and replaced it with the original button trach Tori had in previously. Tori responded very well and has maintained her breathing and blood oxygenation vitals all day. She is breathing humidified room air through a mask over her button trach opening just as before. Tomorrow we will plug the trach and see how well Tori responds. Our goal is to try and get the button trach removed as soon as possible so we don't have it as a source of infection... We will also need to do swallowing tests with barium laced liquid or yogurt to make sure content in her mouth will go where it is supposed to. Tori also demonstrated just how strong her cough is for the medical staff. Once the button trach was in she shot coughed up phlegm across the room!! The medical staff were definitely impressed :-) With Tori's great cough, a demonstrated gag reflex and her swallowing we should be set well to remove the button trach soon.

Tori's bilious output from her stomach has greatly diminished from the massive outputs prior. This is another great sign and it is just tempting us to try and place feeds into her stomach but we need to wait for that extra 10lbs of weight Tori needs!! It would be sooooo nice to have her digestive system working properly again. We will continue to monitor her stomach output very closely.

Tori's PT therapist brought in some new hand splints for her today but we haven't tried them yet. Andy also brought in a nice picture of the University of Utah Dance Team complete with a message to Tori offering their prayers and best wishes. It was also autographed by the entire team. Andy told me he cared for one of the dancers in the picture who also had a TBI.

Guy and Sophie are both back from europe and visited Tori this afternoon. It is so good for all of us to have them back!! :-)

Thanks again everyone!!

-Tim

Good evening,

Since Tori had a 6:30pm dilaudid dose Monday evening, she ended up sleeping until about midnight and then she couldn't sleep for the rest of the evening... So she took several small naps throughout the day Tuesday to compensate. We also instructed the nurses to NOT give dilaudid without asking either Maria or I personally beforehand. Valium or loretab are fine to give her in the interim for agitation.

This morning the respiratory technicians tried to button her existing trach even after we informed them it would not work. So just like the last time we tried this at the Health South Hospital in Sandy, Tori did fine for a little while but eventually her breathing rate went to 40-50 breathes per minute and her blood oxygen level dropped in to the 80's. Her heart rate also increased to 140-150 beats per minute of course. The problem is that her current trach has an inner cannula or tube that takes up valuable space in her her throat. Tori simply cannot get enough air around it to her lungs when she is plugged. Once we put the button trach in she did fine because there is NO obstruction with that type of trach. So I'm not sure what the plan is tomorrow but the button trach needs to go back in before we can make further progress. Hopefully we can make this happen.

Tori was pretty agitated after the plugged trach test this morning so she had to be given a dose of valium and loretab to calm her. Guy also made it to the ICU around 2:00pm and spent some time with Maria and Tori. Tori was much more relaxed during the afternoon.

Tori is doing very well tonight!! She is diligently watching me type this update and she is turning her head and tracking nicely. She is also swallowing great tonight as well and it doesn't matter whether it is phlegm, nothing at all or lifesaver breathmint flavoring. Yes, I took a breathmint tonight and asked Tori to open her mouth so I could rub it all over her tongue and lips. I also told her that a finger would NOT taste good with her breathmint... ;-) She opened her mouth wide each time and once I was finished she would immediately close her mouth, move her tongue and jaw around before swallowing several times. She was without a doubt - tasting it. I repeated the process many times until half of the breathmint was gone!! Tomorrow we will sneak in some more treats for her to try. With her looking at me, I could also ask her to look at the breathmint in my hand as I placed it in front of her face. Tori would look right at it and I could watch as her pupils refocused to it.

Tori had one PT therapy session today and Maria is finishing up giving Tori a sponge bath. Hopefully she will sleep well after her 10:00pm medications are given.

Thanks once again and that is the quick update for tonight,

-Tim

Hello,

Tori had some difficulties with her GJ-Tube once again late Sunday night and early Monday morning... This time the J portion of the tube became plugged and we couldn't unplug it... Some of Tori's 10:00pm medications were not dissolved quite enough and a plug developed after given them. Tori was very agitated as she usually is when her GJ-Tube goes bad. We tried loretab and valium to calm her but eventually had to give her dilaudid at 1:30am. That dose put her to sleep for the remainder of the night and into the morning. I spent my first night at the UVRMC and found a nice, dark room with a couch very close to Tori's room. It worked pretty well and I woke up every hour or so to check on her throughout the night.

We were scheduled to get a new GJ-Tube placed first thing in the morning but we ended up getting to radiology around 11:00am... By that time, Tori hadn't received any of her medications or feed for over 12 hours. Thankfully, the GJ-Tube placement actually went quite smoothly this time and they also used a larger type of tube which 'should' help to prevent plugging moving forward. The one drawback of the new GJ-Tube is that it protrudes straight out of Tori's stomach and there basically is NO tube slack to work with. I am anticipating that this will present problems when we begin Tori's full therapies once again.

Tori was weighed today and the results indicate she is now 100.4lbs!! So she is moving in the right direction. Since every scale around here seems to be different I am anxiously awaiting the next weigh in. Hopefully it will show the same result or better. Ten more pounds would be great!! :-).

Tori went all day without the ventilator and vital statistics did well once again. I believe the antibiotics are almost complete by now and there should be only 1 or 2 days left. They did take additional blood and phlegm samples today and we will watch for any new growth on those. None of the previously taken samples have grown out. She was NOT moved from the ICU today.

Tori's PT therapists came by again today and did their normal routine. Tori's muscle tone and spasticity continues to improve mostly because the valproic acid levels are coming back up to the proper levels. Tori still is very startled and reactive to touch though. We are hoping this behavior leaves her as we begin to take her therapies back to full force.

Thanks again and goodnight,

-Tim

Hello all,

Tori's was removed from the ventilator all together today and was only given humidified room air through her trach. Once again, she maintained her vital statistics throughout the day as well. The cultures taken several days ago have still NOT had any growth so it appears once her antibiotic doses are finished she will be ready to go once again. Tori will probably be moved to a general hospital unit at the UVRMC tomorrow.

Tori once again received her PT therapy twice today and one of the therapists mentioned the left side of her body seemed much more relaxed and flexible than her right. Tori also took a couple more hour long naps today and Maria and I washed her hair and gave her a sponge bath as well. Valium and Loretab had to be given to her late tonight to calm her down. We are still guessing that it is the SMA syndrome causing her pain because we have nothing else to indicate it is something else at this time... It is also time to weigh her again and see if we are making any progress on that front.

And that is another short report for tonight.

Thank you,

-Tim

Hello again,

Tori's breathing continues to improve as she was on the spontaneous ventilator mode for the majority of the day. She is also maintaining her vitals statistics and coughing only occasionally. Tomorrow we will attempt to remove the ventilator entirely once again.

Guy is also finally back from Europe!! We both spent the afternoon with Tori and she promptly fell asleep as Guy described some of the details of his trip... :-) Sorry Guy... It was actually very nice to see her take a nap on her own without any Valium or Loretab to help her. She still grimaces with pain at times but for the most part she is very calm and aware. We would really like to have her weighed again in the near future. We believe the SMA syndrome is likely still causing her the pain.

The PT guys came around twice today and worked Tori's arms and legs. I was also able to get Tori's new finger separating splints on her arms and hands this morning after she had some valium. Once she woke up she tolerated them quite well and kept them on all day.

Maria and Guy are with Tori tonight and Mark and Julie visited as well. Guy sat by Tori with the computer and created a new Tori News Room , section on her website. It is located in the right hand column of the site.

That is the short report for tonight.

Thank you all once again,

-Tim, Maria, Tori, Whitney and Brendan

Good evening,

Tori slept well again Thursday night and had a relatively calm Friday as well. She was also off of the ventilator for much of the day and that includes tonight as well. We left at 9:30pm and she was still on spontaneous mode which means she was breathing on her own with the ventilator attached as a precautionary backup. They might try and let her sleep without the ventilator tonight. Tori was sleeping already when we left the hospital.

Tori's lung x-rays still look great!! There also were NO bacteria growths on all of the samples taken yesterday. We did find out the urine sample was contaminated so they will need to take another. Tori's temperature spikes do continue to appear throughout the day so a bacteria of some form still exists in her body. The ICU medical staff is sticking with the Vancomycin, Levaquin and Primaxin antibiotics for now.

We still haven't received the results of the EEG they did on Tori... We are not sure if any of the neurologists have even reviewed it yet. I also do not have answers yet on why the Valproate was missed but I guarantee that I WILL find out.

Tori will remain in observation inside the UVRMC ICU for this weekend. She basically cannot be moved until she is recovered from her infections and can breath entirely on her own once again. We still do not know where her next home will be...

Thanks again everyone for your continued love, prayers and support,

-Tim, Maria, Tori, Whitney and Brendan

Hello,

When we arrived this morning the first thing we noticed was that Tori had virtually NO myoclonus!! When we left last night she was administered her first dose of the 'missing' Valproate and she received another just prior to our arrival. The results are amazing as Tori has no more extreme limb jerking or eye twitching and you can even touch her now without her going ballistic. She is very much at ease again just as she was when we arrived at the UVRMC. Now if we can her out of the ICU once again we can get moving on the therapy and rehabilitation once more... And I am also still investigating how the Valproate was missed in the first place!!

We kept Tori off the ventilator this morning until about 11:00am when we had to help her out a little. Tori's breathing is definitely not as strong as it should be and the x-ray on her lungs today still show them to be very clear. So there is confusion amongst the ICU medical staff... She continues to get temperature spikes which typically means there IS a bacteria of some sort in action. We took additional blood, urine, stool and phlegm samples again this afternoon and sent them to the lab. We also switched one of Tori's antibiotics and added a third. So she is on Vancomycin, Levaquin and Primaxin now.

We haven't received the results of the EEG they did on Tori to see if the limb jerking was caused by seizures. We definitely do not believe they were since the Valproate has all but eliminated them. But we would still like to hear about the EEG results and compare them to Tori's previous two. I read the previous two and the final analysis on both was that there was only minimum abnormalities from a normal EEG.

Since Tori's heightened sensitivity has diminished her minimal PT exercises of basic hand, elbow and arm stretching went fairly well today. We keep rotating her leg braces on and off but still haven't attempted to put her new arm splints with the finger separators on...

Alright, we are still waiting to get out of the ICU and our next location is still unknown.

Thanks again everyone,

-Tim

Hello everyone,

We hit day 100 today update: (actually, yesterday - we had the numbers off by one day) on what has been a wild and unpredictable ride following Tori's accident. The good news is that Tori is still with us today and is always fighting. Many more challenges await her and we realize that everything ahead of us is still greatly unknown but all we can do is to continue to hope, pray and strive for the best possible outcome. Thank you all so much for providing the support Tori and her family needs to continue.

As I am typing this update Tori is completely mesmerized by the show "So you think you can dance?". She typically ignores the television and watches other equipment and people in the room but right now she is completely focused. Tori was taught dance by two of the judges on the show so again, we just wish we knew exactly what she is thinking right now...

Alright, Tori went completely OFF the ventilator first thing this morning and went ALL day without any issues. Her lungs are almost as strong as they were previously to Sunday but she did tire late this afternoon so we placed her back on the ventilator for a rest. She will remain on it tonight as well.

We were still unsure if Tori's new 'limb jerking' movements are seizure related or just a different looking form of myoclonus. In the past, Tori's myclonic tremors were very rhythmic and smooth. They weren't nearly as jerky or intermittent as they are now. If you get Tori to calm herself down the jerking stops just as the myoclonus did in the past. Another fact is that it has been quite a while since we have even seen myoclonic behavior in Tori so we WERE confused... So we decided to give her another EEG today. Tori's head was filled once again with probes and glue and electrical readings from her head were taken during her jerking. We are unsure of the results at this point. Tori has had two EEG's in the past and we want the PCMC neurologists to compare and give us a diagnosis. The neurologists here at UVRMC will also review the results which is good because they have a fresh perspective. We washed Tori's hair twice today and the glue mess wasn't near as bad as the last time we did a EEG.

Now, back to the WERE confused!! After I typed the update above I decided to THOROUGHLY review Tori's medications and I actually found one very important one missing!! Valproate!! One of the leading myoclonus inhibitors we used throughout our stay at the PCMC. We in fact kept upping Tori's dosage of it to keep her in the 80-100 levels. So I called one of Tori's old nurses at the PCMC and asked her to verify that Valproate or Depakene was still on her order when she left and it was - 650ml every 6 hours. So I had the ICU doctor immediately start her back on it tonight... ARGH!!... Tomorrow I will find out exactly how this one slipped by of course... Alright, on to the rest of the update...

Tori's vital statistics remained very sound once again today and she received the minimal PT exercises of basic hand, elbow and arm stretching. Tori's heightened sensitivity also still exists. We also received some new hand braces which also separate all of Tori's fingers on each hand. Putting this on Tori is a complete challenge!! We failed the first time today though we didn't try real hard. I am afraid it will take a serious valium dose before we can get them on her...

The antibiotics are continuing to fight the Staphylococcus aureus and Bacilli bacteria identified in her Phlegm. There are at least three more days of doses left for Tori on this front. We did NOT remove the Cefepime to see if it is causing the limb jerking because we felt in three days she will be off of it anyway.

Hopefully Tori will be moved out of the ICU sometime tomorrow.

Thanks again everyone,

-Tim, Maria, Tori, Whitney and Brendan

Hello,

From the Monday evening nurses report, Tori slept quite well overnight with only her melatonin and bennedryl doses. When I arrived this morning Tori was still sleeping.

At 9:00am she finally woke up and was very calm with good vital statistics as well. She received some very minimal PT today that consisted of basic hand, elbow and arm stretching. Tori is extremely sensitive to ANY touching right now so she trembles greatly and becomes agitated during any touching... This is a typical behavior when she is sick but it seems accentuated this time.

Tori also had another chest x-ray taken today and it showed very little clouding or symptoms of a pneumonia again. This was confusing me so I asked the ICU doctor once again whether or not she really has a pneumonia. He now believes she may have a case of Bronchitis caused by the infection from the Staphylococcus aureus and Bacilli bacteria identified in her Phlegm. I'm not sure what to believe at this point... The antibiotics will fight the bacteria none the less.

The medication I had them remove last night was Ragland which has seizures listed as an adverse side effect. We didn't see any of the seizure like symptoms all day so we thought we had found the right medication. But tonight we are noticing some more seizure like activity in Tori... It is more of a physical limb jerking rather than the eye movement which the doctors believe may be Nystagmus. So now we are looking at the antibiotic Cefepime as a possible culprit. Again, we have not seen this behavior in Tori before so we are speculating it is due to a medication. That is all we have to go on. There is always a chance we could be wrong of course...

We will try and remove the ventilator from Tori tomorrow and see how she responds. If she does well throughout the day we might move her to the standard medical unit of UVRMC. We shall see what happens. After that we unfortunately don't know where Tori will land due to other issues...

That is the short report for tonight.

Thanks,

-Tim, Maria, Tori, Whitney and Brendan

Good evening,

Tori's vital signs thankfully remained stable throughout Sunday night and during today. But you can see in her eyes and in her very low keyed behavior that she is definitely sick once again... It is also somewhat disheartening to see that ventilator attached to her trach even though it is providing very little breathing support for Tori. We have already switched it to spontaneous mode which makes Tori breath on her own but her heart and respiratory rates rise due to the Pneumonia she is battling. Helping her breath and letting her completely rest is the best support we can provide for Tori at this time.

Several bacterias have now been positively identified in Tori's Phlegm. Staphylococcus aureus and Bacilli are the two culprits this time... Two antibiotics continue to be administered with one of them being the strong Vancomycin we have used several times before.

Tori had an additional chest x-ray taken today and her lungs still do NOT look too infested with pneumonia like symptoms which is a very good sign. Her temperature does seem to fluctuate between 37-39 degrees Celsius as expected with a pneumonia. We all know how strong and how hard Tori seems to fight these infections and hopefully this will be just one more she beats!!

At 1:00am Sunday night it was determined that Tori's GJ-Tube had slipped out of her small intestine once again... Yes, that same GJ-Tube implanted a couple weeks ago which could never slip out again!!!... I am still unsure how the medical staff determined this, whether it was an x-ray or feed coming from her stomach down drain and I need to find that out. Maria nor I spent the night Sunday night because you are not allowed to sleep in the ICU rooms and there are no comfortable chairs in the rooms to do so anyway... Since we are only 5-10 minutes from the UVRMC we give the on duty nurse our phone numbers and hope and pray for no phone call late at night... Tori also has one on one nursing again which is comforting. So Tori had yet another GJ-Tube placed between 10:00am and noon today. Maria warned the radiologist Tori was tricky due to her SMA syndrome as he confidently walked her into the room. We are not allowed in the radiology room at the UVRMC but when Tori came out two hours later there was a little less confidence displayed... Feeds were started once again after she arrived back at the ICU.

Tori also had her first blood transfusion today... The White Blood Cell count in her immune system was very low and we needed to bring it back up quickly to help Tori fight off the bacteria in her system and to prevent against any Septic Shock conditions. She was given two pints of blood and will have her white blood cell levels measured again throughout the next week or so. Her sedation was also turned off this afternoon so she was more awake and aware of her surroundings. She has a room with a great hallway view and she tracks everyone in it and everyone walking by.

One troubling new behavior we have witnessed in Tori over the last three days is some apparent seizure activity. She had a couple of short seizures a couple of days ago and now at times her eyes will just shift from side to side rapidly for two seconds. It seems to occur when she is focusing and it doesn't happen very often. We are now examining some of the new medications she is receiving since nothing else has charged in her care to cause this. Two of the three new medications are known to cause seizure like activity so I had them remove one of them tonight. So we shall see what tomorrow brings us.

I believe it will be good to close with some positive items tonight. For one, many of the ICU medical staff members now working on Tori know of her already which is wonderful!! Thanks to so many of YOU who support and spread the word about Tori!! Those who know of Tori also seem to give her that extra bit of care she so greatly deserves. The ICU nurses are also appreciative of everything we are doing for Tori though one was quite shocked when she saw Maria suctioning Tori. Maria quickly explained she has been doing it for 98 days and everything was well :-) I had a similar positive experience tonight when I asked the nurse not to administer one of the seizure causing medications we have under question. She accepted and agreed with my assertions on NOT to give the medications and she would confirm it with the doctor. These behaviors greatly increase our confidence and theirs in providing Tori with the best care possible.

Thank you once again everyone,

-Tim, Maria, Tori, Whitney and Brendan