Tim Schmanski's blog

Hello,

Grandpa and Grandma Schmanski spent a restful Thursday night with Tori and she slept from 8:30pm until 6:00am or so. Then Tori began her very engaging day.

Doctor Vickroy and Tony, the respiratory technician examined her trach, throat and lungs and decided to plug her trach. Tori responded very well and went for 3 full hours of breathing normal through her throat and mouth. Her blood oxygen levels stayed at a steady 94%-95% throughout the time frame and we also heard sound from Tori for the first time in a while. Mainly just humming sounds as she adjusts to having air flowing past her vocal cords again. We also plugged her trach for another hour this afternoon and will continue testing her in this fashion through the weekend. On Monday an 'Olympic Button' will replace the trach in Tori's neck and she will be breathing through her throat and mouth in a completely normal fashion. Many more sounds should follow after that.

The occupational and physical therapists placed Tori in a standard chair today. Then they placed a removable desk in front of her and laid Tori's arms across it and then rested her head on her arms. Tori responded by raising her head off her arms and repeated this several times. This was a very positive accomplishment according to the therapists as it takes great strength to do this exercise.

Tori had many visitors today including Brandon and Deanna, Marilyn, McKenzie, Kara, PCMC nurse and friend Dawn and her children, Guy and Sophie and finally Todd and Laurie and their kids. Tori seemed to enjoy all of the company. Tori especially fixates on one of her best friends McKenzie as she gives Tori all of the details surrounding school, dance, boys or anything else that comes to her mind :-) It is rather fun and interesting to witness time and time again.

Tori wrapped up the day with another great bath!! She enjoyed it once again and she is now trying to get herself some rest for tomorrow activities. One last note is that Tori had her last dose of antibiotics today and her IV is now removed!! She is untethered now and tomorrow morning will begin with a wheelchair ride around the HSH.

Good night!!

-Tim

Good evening,

I always like to start out the daily updates with a review of how well Tori slept the previous night because it truly does have an impact on her day. Tori slept very, very well again last night and her dependency on sleep inducing medications seems to be diminishing. She is finally on a nice night and day sleep cycle.

All of Tori's therapists continued running various tests with her again today. Most of them are still trying to establish a baseline on Tori's current capabilities. We also learned much more from them on how a patient like Tori is experiencing her stimuli. I also feel that I need to dedicate myself to some more focused internet research on therapy techniques and measurements. Having internet access at the HSH would make this much easier of course...

Here are some examples which were given to us by the therapists:

Tori likes to maintain her arms in a protective position with her fists brought to her armpits and her forearms laying on her chest. This is exactly what a newborn child will do as well. In Tori's mind, when we try and move her from a position like this, she believes we are trying to break her arms so she is naturally very resistive and grimacing in percieved pain. Very interesting right?? This applies basically to all of the resistive physical therapy actions they are completing on her body. No wonder why she hates it...

Another one. Tori's mind is currently taking in all of the stimuli around her but she doesn't understand how to process it all. So it is best to keep the stimuli focused and at a minimum so she can begin to comprehend it, little by little. To put it in perspective an example was given to us. You know those times when everything is going on around us all at once and it seems we have no control?? The phone is ringing, the kids are screaming, someones knocking at the door, you just spilled a gallon of milk and you stubbed your toe - Tori feels this constantly!! Could you imagine how distressing that would be?!? So there are some new directives in relation to this. We are going to greatly diminish sounds and activity in her surroundings. Once a therapy session is completed, Tori will also be given a 15-30 minute break with total silence so she can absorb the results of the session. This will probably be hard to adjust to but it must be done.

The speech therapist today tested Tori's sense of taste with an orange sucker, pixi stick candy and a strawberry. Tori had a taste of each and the response was noted. She really didn't react much differently on any of them but she was somewhat agitated during that test so they are going to try it again.

We also found today that sitting Tori up almost vertically in her bed and leaving her in that position is totally relaxing to her!! She was agitated prior to doing this but once we placed her there she immediately fell asleep. It didn't look very comfortable but she did get a nice nap!! :-)

Tori has only 1 more day of antibiotics left to be given then the IV in her foot will be removed!! That will give her another degree of freedom and we will tour the HSH in her wheelchair to celebrate.

Thats it for tonight and tomorrow Tori has another full slate of therapy scheduled.

Thanks,

-Tim

Hi again,

Tori's has now completed an entire day at her new HSH location!! Her first night also went largely uneventful as Maria and I took turns clearing Tori's trach after she coughed during the night. She continues to clear the Phlegm in her lungs entirely by herself in most cases. We rarely have to suction after she coughs. She slept throughout the night and the nurses and technicians entered her room every 2 hours or so to check and reposition her.

This morning began with a visit from the physical therapist who gave Tori a complete stretching and range of motion examination. She definitely pushed Tori to her pain points and will now outline a rehabilitation strategy and program around her findings. She also helped us sit Tori up then stand her up for a while. Tori responded well and did not become agitated. After that we placed Tori in her wheelchair for about 45 minutes but we did not do any touring this time.

The occupational therapist also appeared and ran another set of similar tests and exercises on Tori and she too will develop a program for Tori based on the results. The speech therapist came in next and completed her set of tests which included basic eye tracking and recognition, reaction to noise and light and many other response gathering type tests.

I spoke with all of the therapists and their associates today and informed them of our desires for a highly aggressive approach to Tori's therapy. Again, we want Tori going 3 hours a day or as close to it as we can possibly get. I believe the therapists are indeed on board with this approach and I am eager to see the programs outlined for Tori.

We also met with Tori's respiratory technician and placed Tori on a respiratory mask rather than a 'T' type connector with a suction device built in. We brought several of the trach suction tubes with us from the PCMC and we prefer them greatly over the default ones at HSH. Since Tori coughs so well, suctions are again limited and having a bulky suction tube always attached is overkill in our opinion. Plus it was harder to use than the PCMC unit. It was very encouraging that they took our input seriously and complied with our wishes. Believe me, after 55 days of using the trach suction device we EASILY passed the trach 'certification' questions they ran by us afterward :-) We also set another goal with the respiratory technician and Tori's doctor, Dr. Viceroy. The goal is to remove Tori's trach as fast as we possibly can which will involve aggressive testing and exercises as well. Both of them feel she is very close so we shall see. We will be trying a trach plug in the very near future which will allow us to HEAR what sounds Tori can make.

Tori was treated to a very special treat after her busy, busy day. We actually gave her a full fledged bath this evening and boy did she enjoy it!! We removed everything she was wearing and placed her on a waterproof, hoist like carrier. We then covered her with blankets and went down the hall to a room with a very large tub filled with warm water inside of it. We gently lowered Tori into it and she didn't flinch at all!! We kept her head and trach above the water of course and soaped and scrubbed her quite well. We also washed her hair and when we finished drying her off and placing her back into her bed afterward she seemed SOOOO RELAXED!! Yes, we will be doing this much more often for Tori :-)

The nurses are trying to get used to the mass amount of medications Tori still is taking. It is still much better than before but there are about 10 steadily given drugs and another 8 that are given as needed. Keeping Tori on schedule keeps the nurses hopping for sure. Our goal is always to lower the amounts even more and this will continue as we proceed through the rehabilitation efforts.

I wanted to close tonight by letting everyone know our optimal plans for Tori at the HSH. Removal of Tori's trach and having the very aggressive rehabilitation mentioned are our top priorities. I'm sure we will learn even more during our stay and as soon as Tori demonstrates enough positive forward progress, we are going to bring our daughter HOME where she truly belongs and deserves to be. Introducing her directly back into our loving and caring family life again will provide the greatest stimuli possible and it will surely help our family feel 'together' again. This is our greatest desire. The challenges for Tori will obviously continue but tackling them with all of her family and friends close by will be so advantageous. Please direct all of your thoughts and prayers to this goal and I'm sure it will happen much sooner than we anticipate.

Thank you all and good night,

Tim, Maria, Tori, Whitney and Brendan

Hello everyone!!

Tori did it!! She has finally ended her stay at the PCMC and is now at the Health South Hospital in Sandy, Utah where we can focus completely on her rehabilitation efforts!! We are excited and eager to enter this new phase in Tori's recovery. It's time to put Tori to the test and see what kind of new miracles she can produce!!

We ended up moving her from 3:00pm until 4:00pm today. Tori was absolutely great today and just seemed to soak up everything going on around her. She knew something was up today when we started packing her stuff in the late morning. She just watched intently as the signs came down, drawers were emptied and bags of items were filled. Then we loaded her into the ambulance gurney and took a 25 minute ride down the road to her new surroundings. I rode with her on the ambulance and was worried a bit about it but she just kept very calm and attentive during the entire trip. The bumps and motion didn't phase her at all which I thought was a real good sign.

She now has her own room in the HSH (Health South Hospital from here on out) and they even placed another bed next to hers for Maria, I or anyone else who tends Tori to sleep on. I'm sure with this new bed to sleep on instead of a chair... we will now have MANY volunteers to come spend the night with Tori!! ;-)

We spent quite alot of time with the lead doctor at HSH and filled him in on everything related to Tori. Both Maria and I will be spending the night with her tonight. One HUGE difference between the HSH and PCMC is that there is NOT a dedicated medical technician assigned to Tori. The ratio is about 2 technicians to 4-6 patients and it is about the same ratio with nurses. We will definitely need to be even more aware and attentive to Tori and her needs. We will meet with all of the therapists tomorrow and outline Tori's program. Our goal is to have her doing as close to 3 hours as possible of therapy per day. We will have to build to this of course and we are sure it will be very hard for Tori moving forward. I'm also positive it will be hard for us as well watching and participating in painful but completely neccessary therapy sessions...

One real bad issue at HSH is that they have no wireless internet access... I'm not even sure if they have ANY internet access but I will verify tomorrow. Another negative is the cafeteria is only open for 3 hours a day... Bummer... But there are new restaurants to try that are close I guess!! :-) I'm providing this update from a coffee shop a block away from the HSH and they are kicking me out now...

Thank you all for your prayers and support and it is all paying off!! I believe there is reason to celebrate tonight so I just had a cafe latte!! :-)

Good night!!

-Tim

Hello again,

Tori is continuing to stabilize with each passing day and we are so thankful!! Her sleeping patterns are definitely improving and she is now sleeping mostly during the night. She went to bed for me tonight around 9:00pm or so and she also slept well when Maria watched her the previous night. The only time she awakens is when she coughs or gets her trach suctioned and typically she returns to sleep afterward.

Tori still gets slight fevers sporadically throughout the day and she still has several days of taking antibiotics left on her schedule. Without these factors, Tori would have probably been moved to the Health South Hospital today. Maria and I, as well as the doctors here, want to be absolutely confident in Tori's condition when we discharge her because we don't want to be coming back in a rush anytime soon... It is alot better to wait a few extra days now than to experience a rush back to the PCMC.

Tori stayed awake the entire day again but she did require some Valium at one point to calm her agitation. The agitation primarily occurs when Phlegm builds up in her throat and upper lungs. Once she is suctioned she is usually fine. The Phlegm did appear to be diminishing at one point but now we aren't so sure. This will be closely monitored during the next few days as well. Tori's eyes are now wide opened for most of the day and she is definitely tracking and focusing on anything and everything.

Another uneventful and positive day is complete. Tomorrow Tori is supposed to be custom fitted for wrist splints which we really need prior to leaving the PCMC. Her elbows are acting favorably to the elbow splint and we are hoping for the same on her wrists.

That is it for now, thank you all once again!!

-Tim

Good evening,

Tori is continuing to improve and she gave Grandpa and Grandma Schmanski a quiet and uneventful Saturday evening and early Sunday morning. She was also responsive and awake during the entire day again and had numerous visitors today as well. The color of her skin and her healing lower lip looked wonderful today and the healing appears to be occurring.

The amount of Bilious from her GJ-Tube venting continues to diminish as anticipated and her feeds are still steady 100 milligrams per hour continuous. We weighed her again today and she came in at 45.3 kilograms or 99.7 lbs which indicates she is has gained some weight over the last 4 days. Hurray!! :-) She also sat up in her chair for about 30 minutes and did well. Her breathing seems very good when her chest is in a vertical position so we are going to attempt to place her like this as much as possible even when she is in her bed.

Tori went to sleep unaided by any medications at 8:00pm tonight and was still sleeping when I left the hospital at 9:30pm or so. She was sleeping very deeply during this time with a heart rate of 90 beats per minute, 100% oxygenated blood and a breathing rate of 17 breaths per minute. These numbers indicate a complete state of sleep for Tori and she even had a little bit of a snore going during this time :-)

Maria is spending the night with Tori and sometime tomorrow we will probably determine her departure date from the PCMC barring any last minute health issues. We have been at this point a couple of times before and my feeling is her stay at the PCMC isn't over until she is in her new bed at Health South in Sandy. We shall see what happens during the first part of next week.

Thanks everyone!!

-Tim

Hi again,

Tori did wonderful Friday night and slept until 9:30am this morning. She didn't even seem to mind the suctioning last night and almost slept through it. Her coughing is improving with each day and she can typically clear her own lungs at this point. Minimal suction is needed afterward to get any remaining Phlegm from her throat. The amounts of phlegm are rapidly decreasing and Tori can easily keep her blood oxygen levels above 95% at all times.

Her lower lip is looking so much better as well and at some point we will attempt to leave the bite guard out of her mouth and only insert it during moments of agitation as a precaution. Maria came up to hospital this morning and we left for the fundraiser at 1:00pm. She did great until then and while Guy watched her as well. Grandpa and Grandma Schmanski are watching her tonight and they mentioned she is still resting well and is feeling good and unagitated when awake.

If Tori continues to do well through the weekend we will more than likely move her to the Health South Hospital in Sandy early next week. Our concern at the moment is still the Bilious output from her GJ-Tube. It does appear to be diminishing and we believe the cause is related to inflammation of her Pyloric Sphincter after her GJ-Tube surgery. We are hoping the drainage is complete before we move Tori of course.

That concludes a pretty light update on Tori today. She is doing well and I'm betting we will finally be out of the PCMC early next week as planned. At that point we get to break in a totally new set of hospital staffers so it should be interesting. The best part though is that we can completely focus on her rehabilitation efforts and we are looking forward to this greatly.

Thank you all,

-Tim

Hello everyone,

Tori is definitely beginning to feel much better as she is remaining awake all day and is typically alert and in good spirits. We haven't used Valium since early yesterday evening and we are doing our best to avoid giving it. She began to take a nap this afternoon and was pretty much asleep several times until some Phlegm developed in her trach which had to be suctioned of course... She is also coughing much more than before which is another great sign that she is healing.

Tori began this morning with a nice hair wash and second coat of nail polish on her toe nails. After speaking with the doctors we also decided to remove the NG-Tube and suction tube from her nose. Tori has her beautiful face uncovered once again!! :-) Once it was removed we decided to get Tori into her wheelchair and go for a ride. She did the best she has ever done today during her ride and very actively gathered in the scenery with her eyes. She would often focus on kids as we walked by them. We took her outside on the 3rd floor balcony and it was very bright for her!! It took her a minute or two to adjust her eyes but when she finally did she enjoyed the view of SLC. In the short 5 minutes we were out there Tori heated up quite well and got a good sweat going so we took her back to her room immediately afterward.

Tori's feeds have been increased to 100 milliliters per hour. There is one concern with the increased amount of Bilious we are venting from the GJ-Tube in her stomach. It is not nearly as much as before but it is something we are watching very closely.

The physical therapists delivered Tori's elbow splint today so we quickly placed it on her arms and did a two hour alternation between them. The results were immediate because her arms stayed elongated quite some time after the splint was removed. This practice will continue indefinitely. We also ordered some additional splints for her wrists because she tends to keep them in a curled position. We also upped Tori's Baclofen back up to 100 milligrams per day. We witnessed minor Myoclonus related activity today and that initiated the change. We had dropped it to 80 milligrams per day earlier in the week.

60 days!! Wow!! We've definitely have been through alot in the past 60 days and the future is full of unknowns as well. But all we know how to do at this moment is to continue to move forward and hope, pray and strive for the best outcome possible concerning Tori.

Tori provided Guy and Sophie a nice, uneventful and restful evening. The bag suctioning continues at times during the night and it alone is Tori's sole agitation source. Most of the time it makes her feel much better and she returns to sleep but occasionally she cannot and Valium is used to calm her again. This seems to be very hit and miss process as well and it all depends on Tori.

Tori remained awake for the entire day again and watched movies, tracked well with her eyes, received physical therapy and generally stayed in good spirits. She did catch her lower lip again with her teeth but late in the afternoon she received her molded bite guard which fits nicely over her upper teeth. It appears very comfortable to her and it prevents her from biting her lower lip. It is difficult to slip off her teeth but Tori is already trying to remove it with her tongue so we will have to see how she does. The PCMC Dentists also deserve a BIG Thank You for building this so quickly for Tori!!

Since Maria and I were at home today, I called the hospital in the morning and they informed me the GJ-Tube surgery was scheduled for 1:00pm. We left Orem in anticipation of this but upon arrival at the hospital the surgery was already completed and Tori was in her room!! Thankfully it went flawlessly this time and they had bumped her surgery up to 12:00pm without mentioning it. So feeds are now being given through the GJ-Tube and the NJ-Tube in her nose has been removed. Now if we can get the NG-Tube and suction hose from the other side of her nose removed we will be set. That probably won't happen for a while since we want to keep a close eye on her stomach.

Hello again everyone,

Tori, Maria and I all slept pretty well last night. The only time we didn't really sleep is when Tori's periodic trach suction's were taking place throughout the night. Tori woke up at 7:30am or and remained awake and in good spirits through the rest of the day. Her temperature only spiked once or twice today as well. It an enjoyable day for us all.

Tori had a sponge bath and hair wash today and the physical therapist also took a turn stretching her arms, legs, shoulders and neck. Tori handled it very well and again, her muscle tone is holding up great. The Baclofen pump test is now off since Tori is doing so well and we are truly hoping to never have to use it.

Tori's GJ-Tube in her stomach did NOT get placed today due to the hospital procedures I mentioned yesterday. Apparently, the written doctors orders for this were not translated and entered correct into the computer system... So tomorrow is the new day for this. Tori gave us a little scare last night as blood started to appear in the suctioning of her stomach contents. This was finally attributed to the fact her stomach was clear of any Bile so the suction tube just suctioned itself to the interior side of her stomach. They ended up just shutting the suction off to remedy this issue. The Zantac Tori was given earlier in the week seems to have made a difference in her Bile quantities. This is a very good sign and even when we vented her G-Tube and nasal NG-Tube there was hardly any Bile gathered so it is presumably being processed correctly through her system. Tori had two bowel movements as well today. The digestive system is coming around finally!! Please pray for Tori that it continues to do so.

Tori is continuing to be bag suctioned at least every 4 hours and we are still getting alot of Phlegm out of her lungs. This is expected to diminish as the Zosyn antibiotic is administered through the next 8 days.