Tim Schmanski's blog

Tori remains in the ICU but is still slowly improving. They are removing oxygen assistance in small increments. Her 72hr H1N1 test also proved negative thank goodness!! Hoping to remove the c-Pap mask tomorrow and get her out of the ICU at least. MAria and I are getting ready for another fun night of sleep in the guest room here....

Thank you for all of your support!!

The Schmanski Family
Tim, Maria, Tori, Whitney and Brendan

Tori remains in the ICU but her breathing and awareness is steadily improving. She does run slight fevers now and then but all tests are negative for pneumonia or H1N1. H1N1 can only be officially ruled out after 72hrs so she will still have some more time in the ICU until she is cleared....

She is also getting precautionary antibiotics at this time and they continue to clear her lungs of very thick secretions. They are thankfully pulling less and less out each time and reducing her oxygen assistance as well.

So all positive news at this point as she continues her recovery from this latest episode. We remain very eager to leave the PCMC as there is an extreme amount of Flu, H1N1, Influenza and other contagious cases throughout the hosptial. We remain masked at all times and the PCMC will not allow visitors that are 14 or under. No doubt the sooner Tori, Maria and I are out of here the better.

Thank you all for your love and support.

The Schmanski Family
Tim, Maria, Tori, Whitney and Brendan

Hello again,

Tori is unfortunately spending the night in the Primary Children's Hospital ICU after an ambulance ride earlier today.... Still trying to ascertain her current respiratory issues but she has greatly improved since her arrival. Please keep her in your thoughts and prayers.

She was scheduled to finally have her spinal fusion tomorrow but alas those plans are squashed again.... Tori had her latest round of botox and phenol injections this past Thursday along with a Flu shot as well. Whitney, Brendan and Grandpa all have had a viral infection over the past several days as well and we believe that is what she has now caught.

She produced a tremendous amount of secretions Saturday night and I had to suction her lungs out during the entire evening. She calmed down Sunday morning and we were planning on taking her to the PCMC for her pre-surgery blood work. But she was very lethargic and couldn't maintain a blood oxygen level above 80% with 8 liters of oxygen so we had to call 911 for support and transport via ambulance to PCMC Emergency Room. The paramedics placed her on 15 liters of oxygen to maintain 95% during the trip.

She is now connected to a BiPap system to help her breath more freely and her blood test results are improving. All other cultures will be known tomorrow as well. They are extremely cautious due to the rampant H1N1 Flu going on in our area and in the PCMC. We will be taking Tori out of here as fast as we possibly can because it is the worst place for her, or us, to be at this time....

Thank you for checking in and I will provide more information as I can. We certainly do not miss the PICU but Maria and I will be spending the night once again as well....

Thanks again,

The Schmanski Family

Happy Birthday Tori!!

Tori had her 19th birthday on Sunday and she spent it with her family. We didn't really do too much of anything but hang out with her in the house. Peace, quiet and restfulness was the mode for her birthday this year.

Tori's Ventral Rhizotomy was originally scheduled for June 29th but was cancelled due to non-approval by her insurance company... The interesting thing is they ended up approving it after appeal three days later. Oh yes, we DID win that battle!!! But after careful consideration and Tori's upcoming Spinal Fusion surgery on August 31th the timing was not right for two major surgeries back to back. We just can't put Tori through that much in this short time frame. Tori will spend 2-3 weeks at the PCMC recovering from the Spinal Fusion surgery which will take approximately 6-8 hours of surgery. Dr. Stephen Santora will perform the surgery. Hopefully the surgery will be a success and her pain and discomfort will be lessened and her breathing and digestive system will return to a more 'normal' state. We will now reconsider the Ventral Rhizotomy at a later time.

We are still very concerned about the Swine Flu but hopefully they may just have the vaccine available and Tori would certainly be a priority to have it. We shall see.

Today marks the four year anniversary of Tori's anoxic brain injury caused by a near drowning on Father's Day 2005. Four long and tumultuous years with so many highs and lows and many more to come I am sure. We continue to care and help Tori as best we possibly can and involve her in our family life as much as possible as well. Even though she still cannot walk, talk or communicate with us in any consistent fashion we KNOW she loves and appreciates us and we can see that everyday in her ever beautiful eyes. She has remained exceptionally healthy throughout the past couple of years but we are facing some pending surgeries and new challenges at this time...

Our newest challenge is the Swine Flu that has been sweeping the world and presently Utah has the highest death rate per capita of any state. Two more people each with existing medical conditions died last week... Several people at my office have been confirmed with Swine Flu and I have been working from home now for a week and will continue to do so as I watch who else will be affected. I am still doing fine but have a slight tickle in my throat presently. The Dance Club apparently also has several girls with the Swine Flu and Whitney currently has a sore throat but no fever and she will not be dancing there for a while either. Last week we also had to take Tori to the PCMC for three different appointments and it seems that everyone in that place is there for the Swine Flu as well... Needless to say we are very, very scared and concerned with this and it's getting harder to keep Tori completely isolated as we would like.

Hello all,

Tori has been doing quite well since my last update several months ago. Outside of a trip to the PCMC late last week she has been very steady. We ended up having to take her because she was highly agitated and in much more pain than normal for a couple of days straight. We thought she may have a bowel blockage but we took various x-rays and ran numerous tests on her during our 5 hour stay in the emergency room and she checked out fine on everything. She starting feeling much better the very next day so maybe being in the hospital that long once again just helped her “get over it” :)

Tori’s therapies have continued though now that summer is here we will cut back on at least one of her ST sessions each week. Her PT sessions will also be cut down to one per week so we can reserve what her insurance covers and have at least one PT session per week throughout the year. With school out the house is also much more active having Whitney and Brendan home during the entire day. Grandpa and Grandma Schmanski have also been at the house for several months and are helping out immensely. Thank you so much and we love you guys!! :)

We have met with Tori’s doctors about the Ventral and Dorsal Rhizotomies and Tori is scheduled for surgery on June 29th. She will also be evaluated for her spinal fusion surgery on July 2nd and the surgery schedule for that will be determined afterward. It will be a busy summer for her and our family with 3-4 weeks of hospital recovery time for the combined surgeries. Our goal with them is to make her as comfortable and free from pain as we possibly can.

Other than all that there really isn’t much else to report on. We would like to send a BIG THANK YOU to Bonnie Miller for sending some of Lauren’s clothing and medical supplies for Tori to use. The clothes fit her wonderfully and will be well used by Tori!!

Thank you for checking in on Tori and our family and we appreciate all of the love and support provided.

Hello again,

Back to the premise that no news means all is steady. Ok, that is bad excuse for not having more frequent updates I know... I will try harder on this front. Our family and Tori had a nice holiday season and spent Christmas Eve with the entire family in our home. I had two weeks off for the most part and was able to unwind with the rest of our family and prepare for the upcoming year which will involve additional surgeries and procedures for Tori. We have opted to stall on any of them due to RSV season... The winter months are just not optimal for anyone to be be in a hospital for a extended period of time and especially for those in Tori's condition where infections of any sort can potentially be life threatening. So we will attempt to schedule any and all procedures for around mid-year.

We are contemplating spinal fusion surgery for Tori along with Combined Ventral and Dorsal Rhizotomies which must be done before the spinal fusion surgery so we need to schedule an appointment with the medical experts at PCMC before deciding. It is a relatively new procedure with limited clinical results but in personally reading those they do sound promising and would help with Tori's extreme dystonia. Several of the case study patients were able to have their baclofen pumps eventually removed after this surgery. The combination of both surgeries might mean up to a month of hospital time if both go as planned... We aren't very excited about that aspect. Tori is also scheduled for her next round of botox and phenol injections this week.

Hello all,

I am well overdue for an update once again... My apologies but please keep with the premise that no news typically means all is well. Tori's health and demeanor has been steady for the past two months. She became ill once during that time and required oxygen for a week but that is about it. She is still getting therapies and visits from her teachers at the high school numerous times per week. When she is aware and willing to participate she typically can get 80-100% of her answers correct through eye gazes. Everyone who works with her agrees that Tori certainly does have cognitive ability and getting that consistent communication method is still the challenge.

We have yet to make a decision on the spinal fusion surgery for Tori... The risk involved makes us very wary and we will need to meet with the physicians again in January before deciding. Another medical option for her spasticity and muscle tone was also brought to our attention and it would need to be done prior to the spinal fusion procedure so this enters into the equation as well.

The holiday's are upon us once again and this inevitably means more difficult times for the rest of us unfortunately... This year is no exception. We all miss Tori so much yet she is right here with us... It also seems we can never get ahead on all of the various and many issues we deal with on a day to day basis. It is all so tiring, challenging and overwhelming at times and once one issue is solved there are ten more following it... Sorry to vent a little but this is our reality.

We did have a nice Thanksgiving break though with my brother Todd and his family visiting as well as my other brother TJ and his family staying over the weekend. Grandpa and Grandma Schmanski were also here but have since left the winter weather here for warmer weather in Nevada. They will return again around Christmas time.

Hello again,

It has a been a while since my last update but as far as Tori's condition and daily routine goes it has been status quo. We were finally able to get Tori's next round of botox and phenol injections and her demeanor and comfort immediately improved as it usually does. We have her now scheduled for the next round of injections at the 3 month mark from this set she received.

Tori also had another appointment a Shriner's Hospital in SLC where we had her scoliosis or spinal curvature measured once more. Unfortunately it continues to worsen and it is now bent at a 74 degree angle.... So we now have a decision to make in regards to spinal fusion and the surgery it requires. Our dilemma is if we wait to long her scoliosis is most likely to worsen so the spinal fusion would have less of an impact and be more difficult. Tori is also becoming more uncomfortable and is often in pain when sitting with her head up in her bed or wheelchair. It seems her most comfortable position now is lying almost completely flat on her back. Our major concern is in regards to the 6 to 8 hours of surgery itself plus the two weeks of recovery time in the hospital. Tori would be at risk for an infection as the scar on her back will go from her neck to the base of her spine. The surgeons will also have to work around the baclofen pump catheter which is already placed in her spine. Tori hasn't been to a hospital for extended stay for quite some time and we all know how badly Tori hates being in one as well.... Maria and I also don't especially look forward to it either. But we will need to make a decision within a month or so. If anyone out there has knowledge or experience with spinal fusion please let me know by sending information to admin@pray4tori.com or posting it on this site.

It certainly has been a sad and somber week for our family and yesterday we attended the funeral of our dearly loved friend Erick Caver in South Jordan. He was a very genuine, kind and caring person who always thought of others before himself. He applied his generous nature to so many of us and his Charity Golf Tournamentattributed greatly to Tori's trip to China for Stem Cell Treatments. Our thoughts and prayers are now with him and his beautiful family. He was deeply loved and will be missed by all of us. Rest in peace my friend and until we meet again.