Tim Schmanski's blog

Happy Fourth of July everyone!! :-)

Tori had another good night of sleep on Sunday and she was again pretty much awake for most of the day today. This morning I also saw her raise her left thigh and leg and place it over her right leg. I don't know if it means anything or not but it was something new. Tori was also awake upon our arrival today and she offered up a couple more smiles behind the big venitlator tube that is still in her mouth. At one point today when she was really in an awake state she was scanning the room with her eyes looking at people, the TV, various other items and she was trying to follow the sounds as we talked to her. Again, we don't really know what she is seeing, hearing or thinking but it sure does appear she is responding in some fashion. One of the Lead PICU Doctors was in the room with us at the time for about 20-30 minutes to see first hand why we still have some hope and faith in Tori. We also acknowledge that the odds and statisitcs against Tori recovering in any fashion are still against us but that will not stop us at this specific point. I also requested of her to try and reduce Tori's Keppra intake since we have not seen anymore Myoclonic seizures. Reducing the Keppra may or may not take away some of Tori's drowsiness. There is only one way to find out.

Tori was again awake for much of day and she slept all of Saturday night as well. Guy and I gave her physical therapy today on her legs and arms. Tori really does not like the hamstring stretch at this point and she will stiffen her whole body and wince with pain when we attempt it... It must be done though and we hope it will become easier for Tori as we progress.

When the nurse went to clean her mouth out with the vacuum today Tori reached up all the way to her mouth with right her right hand. It's the furthest we have seen her reach. She still hasn't grabbed to this point but hopefully we will see that real soon. Or again, a punch will work fine as well ;-)

That is about it for the day. It continues to be very hard to be patient because we are all just watching for something new and amazing out of her each day and that can't be expected of Tori. We must continue to hope and pray and eventually the signs will appear. I am quite sure there is alot of healing going on inside of her head right now and it will just take time, time and more time to see the results.

Our nurse told us today that Tori pretty much slept all night on Friday night. This was very good news and Tori was actually awake today about 80% of the time. Getting her sleep cycles back to normal has been a challenge for us so hopefully we are now on the right path. We were also able to get some more 'smiles on command' from her today which was totally encouraging!! Again, we can't wait until that massive tube is removed from her mouth... It is so very hard for us to be patient with Tori's progress because we want her ALL back right now!! Unfortunately, this will of course not happen and we can't expect to see new and exiting things each day. Patience - patience - patience. Hope - hope - hope. Prayer - prayer - prayer. Not necessarily in that exact order either.

We also met with the Trach surgeon today who analyzed Tori for Tuesday's surgery. He stated that Tori's cough is VERY strong and he actually predicted that Tori would eventually gain control of her upper respitory system. So the Trach and perhaps the G Tube would be temporary. Our goal with the Trach and G Tube is again to get her out of the PICU and into rehabilitation immediately. She needs stimulation by all of the Occupational, Physical and Speech Therapists and she just can't get that where she is currently at.

This morning we met with Tori's team of doctors and nurses and we all agreed upon pursuing a Tracheotomy (Trach) and a Gastrostomy Tube (G Tube). We all felt that even if we attempted the extubation again the possibility of Tori having 100% of upper respitory control was slim and not worth the risk. Tori's lungs are now at 100% of normal and the rest of her internal organs are also working great. We do not want to jeopordize that... She is on NO other medication except for the Keppra which is controlling her occasional twitching (myoclonic seizures). It is time for devotion to the next set of challenges regarding Tori's neurological capabilities.

Having the Trach and G Tube will help us move Tori into full rehabilitation mode more quickly and it will also allow us to be much more efficient during that totally unknown amount of time. Both the Trach and G Tube CAN be removed if Tori improves her gag reflex, swallowing and overall control of her body. Her surgery is targeted for next Tuesday and both the Trach and G Tube will be done while she is under anesthesia. Once the operation is complete it will take an addtional 5-6 days for recovery. At that point, if all is well, she will be ready to leave the PCMC.

Tori's day began to a little bit on the rough side as a new physical therapist arrived and pushed Tori quite a bit in her stretching. While she stretched Tori's hamstrings her face grimmaced with pain and turned very red and the tears followed closely after that. Maria and I could hardly stand to watch it... Tori obviously feels pain and the stretching and manipulating of her arms and legs is very neccessary to keep her muscle tone in place. But I am defintely not near as rough on her when I apply the physical therapy myself... The term "feel the burn" has a whole new meaning to me now.

Tori's breathing tube was removed from her mouth at approximately 11:45am today. This process is called extubation. About 6 doctors and nurses helped and observed her in the process. Tori did well on her breathing and coughing but she was lacking the consistent swallowing and ability to produce a gag. The medical team let her breath on her own for about 15-20 minutes as they watched her throat response. It was finally deemed that her upper respitory control was not far enough along to keep the tube removed. The risk of saliva getting down into her lungs was too great and the doctors really don't want her to get a pneumonia at this point. Her lungs have recovered to full capacity and they don't want to risk them getting 'sick' again.

10 days!! It seems like we have been in that hospital forever... And the food is not getting any better either... I guess I should not complain at all because when I look at and talk to Tori I can feel her pain. I pray and hope so very much that she can heal and return to us!!

This morning between 10:00 am and noon I saw firsthand some joy in her eyes and face and it was inspiring. Tori was completely wide eyed and aware like we haven't seen her before. She actively scanned the room with her eyes focusing on whatever she could and she even turned her head at times. Maria and I then noticed a little bit of a facial smile as we talked to her. You couldn't quite see it with the tube in her mouth and the tape on her face but it was there. Then Maria went to take a shower and I began to really talk to Tori and when I asked her to give dad a big smile to which she actually responded!! I was initially quite astonished. I continued to ask her to smile and each time her cheeks would rise into a great grinning position. I am being so completely genuine and honest here with this description and when I called the nurse over to observe and witness it she simply stated "Wow!! That definitely appears to be a reaction." I basically said "Yeah nurse, no kidding - do you notice how she does it on cue when I ask her???" I would think at this moment we are definitely out of the total comatose state once predicted for Tori by the doctors... Don't get me wrong, I love and greatly repect our doctors and nurses and I wouldn't trade them for anyone else but they are very trained to keep you grounded and aware of the worst possible outcomes or scenarios. Just keep fighting Tori!!

I felt so amazed and invigorated during and following my interactions with Tori this morning!! It truly was beautiful to see and quite inspirational to witness and I am hoping that many more of you can experience it in the near future. I know in my heart that there is a great glow inside Tori just waiting to reappear and I am praying and hoping that it indeed will for all of us.

Hello again to all of those friends, family and all those who care and want to hear about Tori's status and progress.

Today Tori's seemed to rest quite a bit and she was alert only a few times during the day. I just left her room however and Maria, Aunt Lorrie and the triplets seemed to be keeping her awake and observant.

Tomorrow is the currently scheduled day for Tori's breathing test. The doctors will examine her in the morning and determine a time to try the test. We are anxiously awaiting it are hoping for the best. Please pray for Tori to muster all of the strength she can for this test. We have dicussed the next possible steps with the doctors whether she passes this test or not. If she passes we will monitor her and try to get her to the 3RD FLOOR!! This is the place you want we really want to get her to :-) If she doesn't pass the test, we will determine a time for another opportunity and seriously evaluate giving Tori a tracheostromy which is a breathing tube surgically inserted into her neck.

Hello again everyone,

Today started off a little rough this morning when Tori had a either a seizure or a myochronic reation. The nurses call them 'rodeos' and Tori was all over the place... It is definitely not very fun to witness but thankfully both the doctors and our favorite Neurologist Francis were present during the episode. The doctors believe it was a seizure but the Francis believes it was caused by myoclonus which can be treated with the correct drugs. So Francis decided that Tori was to be given a new drug called Keppra and I'm happy to report that she had NO seizures for the rest of the afternoon and through Monday night. The Keppra does seem to make her a bit more drowsy so the breathing test has been postponed until Wednesday so Tori can be without any sedation. She needs to be fully aware for that test.

Tori's neck brace was also removed on Monday!! She has even turned her head a few times which is something new for her. I also spent several hours with her today and tested her eye reactions to me moving around the room and out of her view. She definitely tracks the movement with her eyes but we don't know exactly what she is seeing at this point. I also tickled her ALOT and I can get reaction from her much more easily than last week and with the slightest touch at times.

Below is the text from a general update email sent to all of Tori's friends and family.

Hello everyone,

Today was a nice, sssslllloooowwwwww and well deserved Sunday for us. Tori seemed to even take it easy but she was alert during most of the day. She contiunes to move new areas of her body like her head, neck, arms, hands and shoulders. She has some more visitors today and she really perks up when people are around her and communicating. She tends to still get excited which increases her temperature and her body also shakes at times during this process. She will hopefully be ready and rested completely for tomorrows visit by the rehabilitation specialists and for her ventilator removal test. We are hoping and praying for another good day!! More news to follow tomorrow.

Below is the text of a general email update sent on Saturday afternoon, June 25.

Hello everyone,

I would first like to greatly thank all of you who are supporting Tori in so many different ways. I have seen pictures of all the 'Pray 4 Tori" signs plastered all over Orem, I have recieved soooo many positive and caring emails and phone calls, I have heard of the chat room conversations concerning Tori, I have read the logs and I may have even spoken with many of you personally about her. It is truly amazing how many lives Tori has touched and had an impact on!! My family and I appreciate all of this support more than any of you imagine and it provides us AND Tori a tremendous amount of comfort and confidence to continue on. Thank you all so much again and please don't stop!!