Tim Schmanski's blog

Hello,

Tori had another great night of sleep Friday night. After giving her a valium at 1:00am she slept solidly until 11:00am when the OT therapist entered her room for Tori's session. She mainly worked on Tori's arms and shoulders today and when she was finished we placed Tori's hands into the finger separating splints which Tori tolerated for most of the day.

I then got Tori in her wheelchair and we spent about 1.5 hours touring the HSH and we also went outside for a while. Tori watched the cars go by on the busy street and enjoyed the fresh air and breeze. When we were finished I left her in her room and just afterward Grandma and Grandpa Harris arrived to spend some time with her. Sophie and her parents also came in for a visit. I headed back down to Orem to try and find Brendan... To make a long story short he is safe and sound inside the house tonight.

Tori will be sleeping with her trach button plugged tonight. Hopefully she will do very well and we can attempt to remove the trach all together during the next week. That is the goal we are striving towards.

Tori is exhibiting some interesting sounds whenever the nurses come in to change or re-position her. She just seems to hum, moan and make strange noises as they are working around her. More than the usual noises that is so we don't know if she is try to communicate or if it is just the movement bringing out all of the sound. She does make many sounds otherwise and we are hoping she continues to improve on them.

That is the short report for tonight. Thanks again and goodnight!!

-Tim

Hey there,

Tori put in a full 8 hours of sleep in for Guy Thursday night!! So either the new air mattress worked really well or Guy must have been talking to her all night since he typically puts her to sleep when he does so ;-) Thanks for spending the night with Tori Guy!!

Tori's continues to get most of her PT and OT therapies in the mornings. They always include the full realm of stretching on her legs and arms and various other forms of therapy. They had Tori sitting up in her bed once again but she didn't get into her wheelchair again today. Tomorrow we will get Tori in her wheelchair and spend as much time as possible in it.

Maria made it up by 10:30am this morning and she witnessed a small but evident smile!! If we could just get Tori to produce many more of them it would greatly help us all!! :-) Tori is still tracking and focusing very, very well. She knows exactly who is in the room and she also knows when you leave. When leaving the room while Tori notices, she will sometimes exhibit a frown and may even begin to cry. She KNOWS when we leave we are no longer in the room with her. We had Paul, Sandy, Whitney, Brendan, Maria and I in her room today and since we all were 'garbed' up I'm sure we gave Tori a challenge in determining who is who :-) Brendan hadn't seen Tori in quite a while because he couldn't go into the UVRMC ICU. Tori seems to fixate her eyes right on him when he is in the room. Brendan is becoming more comfortable around Tori as well and will now approach her, talk to her, touch her arm and even blow dry her hair. It is hard on all of us because Brendan doesn't quite understand why Tori can't just come home with all of us... Someday Brendan, someday.

Tori had a nice bath tonight and it was the first one she has had in a long time. About 18 days maybe?? She enjoyed it as usual but we had to try and keep a mask on her face throughout the entire bath time... She almost started to eat it at one point... We are all soooo anxious to get out of quarantine!! Hopefully on Monday which is the latest we have heard.

Tori's button trach was plugged for the entire day again and she continues to handle it well. We unplugged her tonight so she can sleep a little more comfortably but the time is probably now to let her try and sleep with it in. We are pretty encouraged with her progress and her ability to maintain her vital statistics while plugged. But we need more success on the next swallowing study we will attempt to do again next week. Please hope and pray for some positive results!!

The pin head sized hole in Tori's GJ-Tube section has been fixed!! There also does not appear to be any leakage at this time so we might have success!! Silicone and an extra tube wrap seems to have saved Tori from yet another GJ-Tube placement... Thank goodness!! :-)

I spent some of my day calling around to various HBOT (Hyperbaric oxygen therapy) providers within the Salt Lake City area. I have a meeting with one of them on Monday afternoon and I am awaiting pricing on another. My research has found that HBOT treatments for near drowning victims often has positive affects. I will schedule for Tori to begin them as soon as possible. I also spoke with a Neurophysiologist and I am trying to arrange for him to do some diagnostic tests on Tori. Again, the sooner the better now that Tori is in a healthy state.

Alright, that is it for tonight. Thank you everyone for your continued love, prayers and support for Tori.

-Tim

Hello,

Tori and Maria spent Wednesday night at the HSH and Tori slept well until about 2:30am and was intermittently sleeping after that. This caused her to be sleeping during the morning once again so her PT and OT therapies were not as interactive as we would like. Guy is staying with Tori tonight and she is sleeping as of 10:30pm.

Guy and I also helped Tori onto her new air mattress which is supposed to help in the prevention of bed sores. Tori has been very lucky not to have had any bad bed sores but that is primarily due to the fact we try and consistently move and re-position her every two hours. She is pretty much 'floating on air' at this time.

Tori's PT consisted of full stretching on her legs and arms and some of the OT had her sitting up in her bed for an extended period of time. Guy was the one who mainly extended it by sitting next to Tori on the bed and balancing her. Tori does very well with her neck and head control while doing this and we will try and repeat it everyday to strengthen her neck even more.

Tori's button trach was plugged for the entire day once again and she did well once again.. Her vital statistics maintained adequate levels throughout the day. They removed the plug tonight so Tori could sleep a bit more comfortably.

We are still having to wear the yellow gowns and other garb while we are in Tori's room... The MRSA bacteria growth results are still negative which is a good sign but Tori does have a type of staph infection on her nose that is being treated.

We will attempt to plug the pin head sized hole in Tori's GJ-Tube section on the outside of her stomach by using silicone glue and another piece of tubing wrapped around the hole. It kind of a 'Home Depot' type fix but if works we will all be very happy!! :-)

Thanks again,

-Tim

Hello everyone,

Tori and I spent our first night at the HSH Tuesday evening and it went much better than previous first nights at a new location. Tori slept from 11:00pm until 1:00am and went back to sleep at 2:00am after a valium. She then slept all the way in until 9:00am when Rhonda the PT therapist began her evaluation procedures. Tori slept so well that she didn't even wake up when they drew blood samples at 5:00am in the morning. I thought for sure we would be up at that point but thankfully I was mistaken :-)

Tori completed her swallowing study with the ST therapists around 11:30am this morning and the results were inconsistent. One of the main problems was that Tori really wanted to just take a nap at that point and wasn't too cooperative in the study. They gave her barium laced chocolate pudding and apple juice but Tori ended up swooshing it around a little in her mouth and swallowing incompletely twice. Using radiology they saw that her swallowing went the right direction and ended in her stomach but she didn't completely swallow everything in her mouth. They also tried to have her suck through a straw which didn't really work at all. So we are going to schedule another swallow study and we will try to catch her when she is fully awake.

Tori's button trach was plugged essentially for the entire day and she tolerated it well. Her vital statistics maintained adequate levels throughout the day. She now has to get used to coughing up her phlegm and swallowing it again and she was somewhat uncomfortable when doing this. It took some time for her to become comfortable the last time we tried this as well.

Tori spent about an hour today in her wheelchair and Maria took her outside for some fresh air. She actually had to wear the yellow gown on the way out as well so luckily there were no mirrors on the way out... ;-) Tonight Tori was also supposed to have her first bath in a while but since she is still under quarantine she could not use the large hot tub... She had to have a hand shower inside the tiny bathroom in her room instead. She didn't care for it much as she got cold after a while. We are greatly hoping to get some negative MRSA bacteria growth results tomorrow or Friday.

It also appears that Tori has a pin head sized hole in the GJ-Tube section on the outside of her stomach... This is typically caused by medications being pushed in too quickly. If they pushed in slowly the hole at least will NOT leak. We are going to try and just repair it tomorrow with superglue or some sort of silicone caulking. It better work!!...

Maria is staying at the HSH with Tori tonight and we should all wish her the best!!

Thank you all once again,

-Tim

Hello there,

First let me thank Guy tonight for staying with Tori at her new HSH (Health South Hospital) location while Maria, Whitney, Brendan and I met many of the wonderful and supporting people at the spaghetti dinner for Tori tonight. The turnout was incredible with over 600 people attending and it was also inspiring to witness!! Thank you all so much!! I will be posting some pictures of the event shortly and if anyone else who attended would like to share their own experience at the event please do so.

Now on to Tori who was moved to the HSH in Sandy, Utah in the afternoon today. We told the HSH medical staff that today was not a great day for us to move her due to the dinner plans and activities but she had to be moved today... We left the UVRMC ICU at 2:00pm today by the time we finally settled Tori in and met with her doctor and nurses it was about 5:05pm when we headed out the door to travel back to Orem. Tori's trip to the HSH hospital went fine after Maria made the driver and the currently sick EMT in the back switch positions... Tori also adapted well to her surroundings that were not really new to her. In fact, she is in the exact same room as her last visit to the HSH.

When we arrived we saw many familiar faces welcoming us back!! It was nice and each one of the medical staff already familiar with Tori were amazed at how much she has progressed since last being here. Tori would turn her head and focus her eyes on each of them. Her skin tone and color also appeared much better to them and they noticed she was also heavier which is great!! :-) In fact, they weighed Tori again and she was at 99lbs. We would still like to see another 10lbs on her!!

I met with Dr. VickRoy prior to leaving and we went over ALL of Tori's medications and plans for her as well. Since we want to remove the button trach as fast as possible, Tori will be getting a swallowing study tomorrow to make sure everything she swallows is heading down the right paths. We will also plug her trach and watch her response. She still has some phlegm build up in her lungs but it is saliva like in color and texture and she coughs it out easily. Her breathing vitals remain solid though so she shouldn't have any problems tolerating being plugged. We also want to be aggressive in getting some more weight on Tori prior to trying to stomach feed her through the G-Tube. She is still set to down drain from her stomach but there isn't hardly anything coming out of it which is definitely a great sign.

Hello again,

Tori's sleeping cycles are currently in sync with day and night as she slept all Sunday night. She also had a couple of great PT sessions today and the first one this morning was basically completed while she was still sleeping. So she was never agitated and her range of motion while sleeping is incredible!! :-) The therapists really enjoyed the workout because Tori offered NO resistance and they really, really stretched her out.

Today offered much of the same as the last few days with excellent tracking, many sucker tastes and swallows plus some Diet Coke :-) She continues to open her mouth and swallow very well. Her sensitivity to touch is very minimal and she will need that when we get the 3 hour therapies going once again. She is currently watching Guy and I working on our laptops and she appears sleepy already.

My cousins from Minnesota left for home today and we already miss their company. Kourtney and Michelle also paid Tori a visit tonight.

They wanted to move Tori today but various insurance related details are still not resolved so we will try again tomorrow. Pretty much a slow day again for Tori and us but we are expecting things to pick up once we leave the ICU environment.

Thank you all,

-Tim

Hello,

Tori had another good night of sleep Saturday evening and early Sunday morning. It finally appears that we have her on somewhat normal sleep cycles once again. We have been using various bright and dark lighting in her room to help with this as well.

Tori once again stayed fully awake and aware during the day today and had numerous family members and visitors. Uncle Todd and aunt Laurie hadn't seen her for a while and were amazed at her newly found tracking, focusing ability and head movement. Her sensitivity to touch is still evident but it is greatly diminished.

Tori had more great tastes of a strawberry dum-dum sucker and a green apple blow-pop today. Many of Tori's visitors today witnessed Tori eagerly accepting the suckers and quickly swallowing afterward. Tori also thoroughly enjoys getting her mouth swabbed and teeth cleaned and brushed. She never bites down on the brush anymore and seems very comfortable with it in her mouth.

Her vitals stayed great once again today but we didn't try plugging her yet... Trying again for tomorrow I guess. It was also mentioned today that tomorrow will conclude Tori's antibiotic medications if the growth results from the samples taken yesterday are negative. We are now going to try and get her into a standard medical room if possible and our main goals are to get her trach removed and put 10 lbs or weight on her. Since the bilious output from her stomach is now almost non-existent we would like to try getting medications and feed into it as soon as possible. Working with a straight G-Tube rather than the GJ-Tube is just so much easier. We feel that all Tori needs is a little time WITHOUT getting sick again to accomplish these goals!!

Thanks again everyone and until tomorrow night,

-Tim

Hey there,

Tori slept quite well Friday night and nurse Claire said Tori smiled at her this morning!! We unfortunately missed the unvalidated smile but are hoping to see some ourselves here real soon.

It was a pretty laid back day today for Tori as we cycled in family and visitors all day. Tori stayed fully awake and aware and continues to demonstrate excellent tracking and focusing ability combined with head movement. She also had some PT exercises and stretching done today. She was rarely agitated today as well and we are trying to de-sensitize her to touching once again. She is improving on this front but is still a bit 'jumpy' at times...

I continued giving her taste testing with a strawberry dum-dum sucker and a green apple blow-pop. Both were big hits to Tori and she very willingly opens her mouth up for tastes and swallows quickly afterward. We are going to try some other items hopefully tomorrow.

Her vitals were great today so tomorrow we are going to finally attempt to plug her trach. More blood and phlegm samples were taken again today as well and Tori continues to receive antibiotics. They want to make absolutely sure she is totally clear of bacteria before removing them.

Alright, that is the short, short report for tonight!!

Thanks again everyone,

-Tim

Hello again,

Well, Tori decided to stay up during all of Thursday night... We thought she was well on her way to sleeping when we left the hospital but she never actually did. The night nurse tried loretab and valium at various points with no luck. At 4:30am she called our house after Tori bit her lip and asked if she could use dilaudid on Tori and we gave her immediate approval and thanked her for calling. The dilaudid caused Tori to sleep until 8:00am or so and at that point she was given a valium because she was in an agitated mood.

Tori then slept for basically the entire day!! She was supposedly first on list to get her GJ-Tube replaced so we waited, and waited, and waited some more... Tori slept during the whole time and at 5:39pm I received a call and she was on her way down to radiology for the placement procedure... We were at home at the time since they close the ICU to visitors from 5:00pm until 7:00pm. The delays in scheduling surely frustrate us because Tori went another 21 hours without and food again. When we arrived at the hospital at 7:10pm Tori still wasn't back into her room in the ICU and the nurse told us we were needed down in radiology right way so we bolted downstairs immediately. When we went into the radiology room Tori was still on the table and the procedure hadn't even been started yet because there was confusion on the GJ-Tube to be used and as to why we were replacing it... After we demonstrated and explained to the radiologist the problem of NOT having ANY slack in the outer GJ-Tube he finally understood the issue. So rather than replacing the GJ-Tube immediately we let him try and work out some additional slack from the inside of Tori's stomach to the outside and it WORKED!! So Tori now has an 8"-10" tube coming out from her stomach with the valves at the end rather than a 1" 'valve tree' protruding from her stomach. Tori was not sedated at all for this since she was still sleeping but she woke up at the end of the procedure and was awake in her room afterward for a few hours.

We still haven't plugged Tori's trach today as we were still watching her vitals and clearing the phlegm build up in her lungs. She slept all day and her respiratory rate was in the 15-20 breathes per minute range and her blood oxygen levels were in the 86%-91% range. Again, we need some more improvement in those numbers and another x-ray was taken on her lungs and everything appears very clear. The MRSA bacteria still hasn't grown out from the sample taken Wednesday but Tori's phlegm secretions are pretty thick and green in color. The lead doctor informed us she should remain in the ICU for several more days due to this...

My first cousins from Minnesota arrived today and were introduced to Tori once again. Janine, Julie and Jennifer saw her during the day when she was sleeping and were pleasantly surprised on how GOOD Tori actually looks. When they observed Tori awake later in the afternoon some reality really hit and touched each one of them. We thank all of you for being here and supporting Tori and us!!

Tori was sleeping very nicely when we left at 10:30pm tonight and the same nurse as last night is watching her and will greatly try to keep her sleeping for us. It would be nice to have her awake all day tomorrow!!

Thanks again everyone and goodnight,

-Tim, Maria, Tori, Whitney and Brendan

Hello everyone,

Tori's eye tracking ability is definitely the best it has ever been!! She just continues to improve and she can now follow objects or people moving across the room quite naturally. She is also turning her head when required and that movement is also much smoother than it has ever been. All of Tori's recent visitors have noticed the improvement as well.

We ended up NOT plugging Tori's trach today because we were watching her vitals and clearing the phlegm built up in her lungs quite frequently. Her respiratory rate remains in the 25-30 breathes per minute range and her blood oxygen levels maintain a 89-95% range. We would like to see a little improvement on each of those vitals prior to plugging her trach. The doctors have noticed some granulation tissue in Tori's stoma which is the opening in her neck where the button trach has been inserted. It is similar to scar tissue. They are concerned it may be blocking some air flow so they are considering lasering it off... It is still undetermined whether to do this at this time. The bacteria in Tori's phlegm was finally, positively identified as MRSA on Tuesday. Another phlegm sample was taken today to see if the MRSA is still present in Tori's system. and that will take another couple of days to check the growth.

Maria gave Tori another hair wash today and Tori still very much enjoys it!! Tori is less excited about the sponge bath Maria also gave her today... We believe Tori is greatly ready for another submersion type bath.

Tori was slated to have yet another GJ-Tube placed this afternoon but now that will occur tomorrow morning. The problem revolves around the last GJ-Tube they placed. It was basically the wrong type of unit but we HAD to place it because they wee out of the correct type and Tori absolutely needed a GJ-Tube placed for medication and feed delivery. The one currently placed sticks out of her stomach like a tree and couldn't realistically be used when Tori begins her strenuous therapy once again. The radiology staff here tried to locate the correct one from other hospitals in the area and from the PCMC as well. They finally found one buried with all of the other types of J-Tubes and G-Tubes that they had... So Tori will have some more fun tomorrow.

Tori is finally giving her new PT therapists somewhat of a break by cooperating much more with them. She is at least attempting to provide them with 'soft muscles' as we call it. It greatly helps them in stretching if Tori isn't stiffened up as much as she possibly can...

We still do not have Tori's next stop determined once we leave the UVRMC ICU... Like I have stated before, you just never know until you are actually AT the new location... Tomorrow several of my close cousins from Minnesota will arrive and we are greatly looking forward to seeing them again!!

Thank you all for your continued love, prayers and support!!

-Tim, Maria, Tori, Whitney and Brendan