Tim Schmanski's blog
I had another couple of business travel days last week and Maria and Brendan are still in San Francisco enjoying some down time as I am typing this. They should return tomorrow evening. Grandma Harris, Whitney and I have been taking good care of Tori I am happy to report she is still doing quite well. She is still sleeping great, has very good awareness and is rarely agitated as of late.
Whitney, Tori and I went to see "Bourne Ultimatum" over the weekend and Tori watched almost the entire movie. She took a slight nap in the middle of it though I don't know how she did given how loud that movie was. She was wearing headphones for most of the movie as well. It seems to me like Tori's awareness has been at a very high level lately. She tracks people, birds, Tinker's the dog and even bee's with relative ease. When I am throwing the ball with Tinker's Tori follows it's trajectory from the deck and even turns her head as needed on long throws. If I throw it straight into the air she will follow it accurately as well. This is all great news of course and I haven't observed this level of attention to these activities even though they have been occurring all spring and summer.
Tori is also making serious attempts to roll onto her back when she is positioned on her side. The problem is her casts are so heavy she can't pick her legs up and swing then over to complete the roll over. We'll see what she can do once those casts are off again.
There was another interesting and promising article this week on Deep Brain Stimulation. I researched this option for Tori a while back but for her spasticity and muscle tone issues. Perhaps it is worth another serious look.
Thank you all for the continued love and support for Tori and our family,
I'm long past due for an update on Tori and I apologize for the rather lengthy delay... Last week was very, very busy as I was on a business trip for most of the week and then I took Whitney and Brendan to Minnesota for a family reunion over this past weekend. It had been 4 years since we have attended so it was great for all of us to see our aunts and uncles and second cousins. The kids had a great time of course!!! Then Maria, Whitney and Brendan headed out to Park City for a few days for a dance competition and they return tomorrow. Then I take off on another business trip and Maria and Brendan head to San Francisco for another break this weekend. So we certainly continue to be quite busy around here.
The good news is that Tori has done very well over the past week and is now oxygen free!!! She is maintaining her blood oxygen levels well and is relatively calm throughout the day. Grandma Harris has also spent the past eight days helping us out at home so she left today to take a much needed break. Tori is spending more time in her wheelchair once again and has been very aware and attentive lately. She even picked out a jet very high in the sky and tracked it along it's path. She is now sleeping wonderfully at night and needs checking on only a few times while she sleeps. I also haven't given her pain medication for almost a week. The pain has definitely resided.
Grandma Harris and I took her to the PCMC for a checkup on her feet last Tuesday. They cut the left cast off to check the scar on her achilles heal. It is about 5" in length and healing very well. They even scratched Tori's foot which caused her to roll her eyes back and just enjoy it!! I can't imagine how itchy those casts are... Then they re-casted her foot and we were off for home. Her next appointment is at the Shriner's Hospital in late August.
Dena Brehm of nearby Park City, Utah recently returned from China where she received SCT and there was a nice article about her trip in the Salt Lake Tribune today.
Tori is still having pain in her feet now and then but only when we have to move them for some reason or another. She is faring much better now and we have eased way back on the pain medication. She still gets herself 'worked up' now and then which increases her heart rate over 150 beats per minute... We have been using inderal to ease her back down.
She is now requiring oxygen only at night and only about 1 liters worth for her to maintain her blood oxygen level in the 95% range. We are once again back in the habit of getting her into her wheelchair every afternoon and early evening. She is tolerating it well and her feet seem to be very comfortable stretched out and up over her pillows while in the wheelchair. Sleep wise Tori is doing well again and has been sleeping through the night for the past few days. It certainly helps all of us when her sleep patterns are back to normal.
Meredyth did stop by this week for some ST sessions and Tori did pretty well on the last one where she did some word matching exercises and played on the computer somewhat as well. Tori did get tired more quickly than usual probably due to her pain medications.
And that is the quick update for tonight. Thank you all!!
Tim, Maria, Tori, Whitney and Brendan
It is Sunday night and Tori finally seems to be out of the great pain she was in all week after her surgery. We have had to give her steady doses of Lortab every 4 hours or so. She was also coughing up alot of phlegm and has been on 2-5 liters of oxygen since her return home. For the first three nights we had to wake up every 1-2 hours and suction her throat out because she wasn't swallowing and her blood oxygen levels were dropping below 80% even with oxygen. Thankfully she seems to be beyond that stage now as she is coughing much less and can be without oxygen while in her wheelchair. While she is sleeping we give her 1-2 liters of oxygen so she can maintain and 95% range or so.
We are keeping busy helping Tori in her recovery and there isn't really much else to report on this time. Grandpa and Grandma Schmanski left earlier this week on their summer trip and we will miss them greatly. This week we will attempt to get her back on schedule with ST and we have another visit to the PCMC for a check on her feet. Her casts are orange and cover each foot and they extend to just below her knee. She certainly knows they are there and if you point them out to her she will begin crying... So we know they don't feel to great to her.
Thank you as always for the love, prayers and support,
Tim, Maria, Tori, Whitney and Brendan
I wanted to quickly provide an update tonight that Tori's tendon release surgery went well and she did make it home last night. We had to wake up just after 4:00am to make it to the hospital by 6:00am. Tori went into surgery ahead of schedule just after 9:00am and was out at 11:45am. We then spent the day in the recovery room where she received alot of pain medication... She is definitely hurting right now. But she was well enough and certainly ready to go home and we arrived there just after 10:00pm last night. It was a long day but we are ALL home now as Maria and Whitney arrived home from NYC just after us at 1:30am or so.
Tori is now sleeping alot since we are giving her heavy pain medication every four hours or so. I'll provide another update this weekend on her progress.
We have been focusing on keeping Tori as healthy as possible over the past week because on Tuesday she will have the tendon release surgery completed on her feet at the Shriner's Hospital in SLC. She has done well and hasn't been ill at all over the past seven days. She is also fully breathing on her own again during the day and night and typically maintains an 88-98% blood oxygen level. We are being sure NOT to mention anything about surgery or visiting a hospital while around Tori... My parents, Brendan and I have been taking good care of her lately as Maria and Whitney are still in NYC. From what I have heard Whitney has made the top 10 finalists for the Outstanding Dancer award of the competition and the various teams from The Dance Club have fared nicely as well. Considering the best dancers from all over the country are participating they all did a marvelous job!! Congratulations to them all but we are sure ready for them to come home.
Tori had a great 4th of July as she watched a fireworks show in our backyard. She liked the various lights and colors but wasn't as keen on the noisy fireworks... She has been spending more time in her wheelchair lately and I have held off feeding her as much as I should for fear of her aspirating and getting ill again before the surgery. She will be in foot casts for 6-8 weeks after the surgery so that should be interesting. They are also going to create splints for her feet and hands while she is under anesthesia. Tori's hands and fingers seem slightly less rigid after her baclofen pump adjustment. I'd like to see more improvement of course and I'm sure we will be increasing the amounts of the 'bursts' she is now getting every 4 hours.
Meredyth continues to work very well with Tori doing ST (speech therapy) every Tuesday and Thursday. She is working hard to get her to drink from a straw of course and now that Tori can actually blow air on command somewhat consistently we are hoping the inhaling action will begin to occur. Tori always can always indicate what she is tasting through flash cards at least. I'm in the process of calling all of the available PT (physical therapy) providers through Tori's new primary insurer. I hoping to have one or two selected this week and then we will probably be in a trial scenario until we find the right therapist.
On Wednesday morning Tori became ill once again with vomiting, a fever and I'm sure she was feeling quite miserable... She must have aspirated again as her blood oxygen level plummeted to 75%. So we have had her on oxygen again all during this week and it wasn't until today that her lungs were finally recovered enough to remove the assistance. She is now maintaining 90-95% once again. Tori seems to have a pattern of getting herself very agitated and 'worked into' being ill just prior to her having an appointment at the hospital. She has timed it just before several times now so we are being tight lipped around her in the this regard moving forward. Her next big date is July 10th when she heads to the Shriner's Hospital in SLC for tendon release surgery on her ankles and toes.
We didn't change her Thursday appointment for botox and phenol injections despite how she was feeling. Maria and Grandma tool her to the PCMC in SLC and spent the afternoon there with Tori since they have to medicate her prior to the injections then wait until she comes out of the anesthesia in the recovery room. Tori also had her baclofen pump refilled and reprogrammed to 'burst' mode which means she will get a larger dose of baclofen every 4 hours starting at midnight instead of the steady flow she was receiving beforehand. Her arms and upper body is already has much, much less tone and we'll be watching her closely trying to ascertain if the 'burst' mode on her pump is working any better. It may take a couple of months when the botox begins to fade before we will be able to tell anything. If she eventually builds an immunity to botox we will all be in big trouble...
Since her injections she has been sleeping very well during the night and is in good spirits during the day as well. She spends the afternoons in her wheelchair as normal and is outside on the deck when it becomes shaded in the backyard. The temperatures are now reaching 95-100 degrees outside so we are waiting until later before heading out. Tori, Brendan, my parents and I went to see the new Disney-Pixar movie "Ratatouille" today and all of us thoroughly enjoyed it. Tori remained awake, attentive and very aware throughout the show.
The past several weeks have been emotionally difficult for myself and my family but we have had more heartfelt and kind response via email, telephone and verbally than is imaginable. I've had strangers approach who actually know me from the site though I don't personally know them and offer their condolences, support and tell me of the impact my family has had on their lives. Thank you all so much!! I've also had numerous new emails from other families with similar situations, difficulties and feelings as well. Before our unfortunate introduction into our situation I never even really knew they existed but I should have known regardless.
Tori is actually doing quite well lately as she has been sleeping comfortably throughout the night, has been rarely agitated and normally has a calm and even temperament. Caring for her while she is in this state is so much easier than if she is completely agitated and fighting you every step of the way... She has been enjoying her evenings outside on the deck and we even took her shopping again to Costco and Target yesterday. She is very tight once again in her upper extremities. I guess she is never 'loose' per say but you can definitely tell when more botox and phenol injections are needed and that time is now. Tori will be getting more injections this Thursday morning up at the PCMC in SLC. She is also due for a baclofen pump refill and possible adjustment to 'burst' mode but I am unsure if that is on our agenda for this trip.
Tori continues to eat small amounts of food but we haven't been able to increase the amounts as fast as we have wanted. We won't stop working on this of course. For the first time ever, Tori actually blew off a tissue placed over her face completely voluntary and on her own. We have been trying this for over a year and she finally did it!!! Meredyth placed a tissue over Tori's face and instructed her to take a deep breath and blow it off and low and behold she did it. She is even blowing through a straw somewhat if she can lock her lips around it. Blowing and sucking through a straw remain a couple of our top goals for Tori. And so the work continues.
Today marked two years since Tori’s near drowning when her life was drastically altered as well as the lives of those around her. The pain and sorrow of today is equal to that of June 19th, 2005 and has not lessened. I have always heard the saying “Time heals all wounds” but I am certain that this cannot be true because no amount of time will heal the great sadness and pain continuously experienced from our loss. It is constant and will always remain. Two years have passed yet tears still flow each and everyday at the thought of our loss, the obstacles and challenges now faced and the memories of our beloved Tori as she once was. I expect a lifetime of this as well. Tori is so greatly missed by us all and yet she is still with us of course. But at every dance recital, every report card viewed, every letter from colleges offering Tori scholarships, every time we see her friends laughing, full of life and enjoying their lives the impact of what we have all lost becomes first and foremost in our minds. At this point I can honestly state that I can only view pictures of Tori and remain composed. Videos of Tori as she once was are still far too emotional and painful for me to view… Perhaps someday I will be able to watch them once more while accepting the fact that Tori will never be that person again. But I can’t right now.
The toll on our family is immense as we continuously battle depression due to not only our loss but to the always present and never ending burdens and hardships placed on our entire family. We are now far from the traditional family we once were and long for the days of past. There is nothing ‘easy’ about our lives at this point and great sacrifices have had to be made by each of us but the unconditional love and devotion for Tori is always present as well. And for as long as she remains with us we will strive and do everything humanly possible to improve her quality of life. The challenge is truly daunting and there are no guarantees that we can change anything about her condition or life as it stands now. But to not try is completely unacceptable. Tori’s strength and determination will inspire and guide us in helping her recover.
I'm happy to report that Tori has finally stabilized and thankfully no longer requires oxygen. She is maintaining low 90's on her blood oxygen levels even when while she is sleeping. She has also slept entirely through the last three nights and that is a very welcomed trend that we have certainly missed over the past couple of weeks. Maybe her latest improvements are an attempt at a Father's Day present and if so I'll take them.
I decided not to dwell on the two year anniversary of Tori's injury on Father's Day this year since the real date occurs in two more days on June 19th. I actually tried to enjoy today with my family and I'll wait until Tuesday to share my thoughts and reflections over Tori's tragedy and the difficult past two years. Today much of my family arrived at our house to spend the day. My brother Todd and Laurie came with most of their kids and my brother TJ's wife Lorrie made it along with the triplets. Grandpa and Grandma Schmanski were of course present as well. Maria is actually taking a weekend break in San Francisco at the moment and was not at home today. Tori spent the day in her wheelchair hanging out with all of us and was very calm and aware the entire day. We ended up going out to eat at a local Chinese restaurant and Tori sampled some tiny pieces of beef and chicken, some watermelon, diet coke and some ice cream to top it all off. She did the best with the ice cream and had numerous bites of it. The restaurant was also very busy which helped keep her attention level up with all of the activity around her.
After everyone left Tori, Whitney, Brendan and I went for a nice late afternoon walk. Tori seemed to really enjoy the sunshine, trees and breeze in her hair. She hasn't been well enough to be outside for a while so I'm sure it was a welcomed change for her. It is supposed to cool off this week so we'll try and make the walk a regular occurrence if possible.
Thanks again everyone for all of the love, prayers and support offered to Tori and our family. It all provides us a great deal of much needed strength and I don't where we would be without it.