Hello again everyone,
Tori has finally calmed down lately and is once again adjusted to being home. She is back to being rarely agitated during the day and night and her sleep schedule is back on track. She sleeps throughout the night and that is plus for all of us as we only need to wake up to reposition or change her. Tori was in the press again as she was noted in a couple of recent Salt Lake Tribune articles. The first was Stem Cells: Hope vs. Hype in the Sunday edition where Tori was mentioned followed by the articles title 'Some go outside of the U.S. for stem cell treatments' and 'Orem parents take their brain-injured daughter to China and encourage others to do the same' in Monday's edition.
There is a charity golf tournament going on this weekend in St. George, Utah and the proceeds will go to the Tori Schmanski fund and the Spinal Cord Society. The event takes place at the St. George Golf Club and tee time is at 8:00am Saturday morning. The cost is $75 per golfer and there are plenty of openings and sponsorship opportunities still available as well. For all that are interested please review the Tournament Flyer which contains contact information and a nice picture of Maria and Tori. For those already in the St. George area there are television commercials running on the local channels as well. We hope to see some of you down south this weekend!! :-)
Tori went to the PCMC in SLC again on Tuesday and her baclofen pump rate increased 100 micrograms per day. She is now receiving 1100 micrograms per day. We are thankfully seeing some results as she does appear to be 'looser' in her upper body especially her arms. I don't think we could get a good read on this over the past week and half because she was in pain and very tense through that time. There was no way to visibly tell by touching and moving her arms. Now that she is much more relaxed again we can see a difference. Depending on how she does during the next week, we might try another mode in the pump. There is a 'burst' mode which can deliver a larger dose of baclofen at specified times instead of the tiny yet continuous dose she is receiving right now. We'll wait and see at this point.
I should have posted this a little sooner I guess but Tori is alright at this time and back at home as well. We removed her from the PCMC in SLC on Monday around noon. She left the hospital with a baclofen dose setting of 1000 micrograms per day. As soon as she arrived home she immediately took a nap and slept much more comfortably throughout the night. It is very apparent that Tori knows where she is at and being at home is much, much better than being in any hospital... I'm sure all of us would agree with that.
Tori has continued to sleep much better through the week and is back on her normal feeding routine as well. Meredyth stopped by for an ST session on Tuesday and was able to work well with Tori once again. Tori's muscle tone is better than it was but still high. She is going back up to the PCMC for another adjustment next Tuesday and I'll request another lumber puncture to her spine so we can compare it to last June's results. Tori's surgeon does not believe the baclofen pump is working but if they are refilling it again every 3-4 months it's obviously pumping the baclofen somewhere. But is it going into her spinal fluid?? That is what we are going to find out.
Speaking of Tori's test results from last June I'll provide a quick recap of what actually happened. Tori had a lumbar puncture where spinal fluid or CSF was taken and then analyzed for several weeks in a lab. They are checking to see how much baclofen it contains and compare it with how much the baclofen pump is outputting. The issue is there are no clear statistics available to determine whether the baclofen in the CSF is the correct amount based on that output. So there are 'reference' points you can compare against. Almost 99% of the time the results show the pump is either totally working and baclofen is delivered or it is not and NO baclofen is delivered and the reference points both high and low indicate this. Well Tori's results were in the middle of those reference points and this is something they have never seen before... Tori's trendsetting and unique qualities appear once again!! They didn't know how to decipher that reading and since there is no shared data on this available they worked off their own statistics of children they have done at the PCMC and deemed that Tori's pump was 'working'. I would have probably guessed the same because again, the baclofen pump was certainly delivering baclofen 'somewhere'. And that is it in a nutshell and we will perform additional tests on Tori to try and determine what is going on with her as much as possible.
Hi Tim & Maria,
I was told about some information that I think can really help Tori. It is called the Tennant Institute of Integrative Medicine. The Dr, Jerry Tennant, gives seminars in different states speaking about energetic medicine. He has worked with drowning victims, & told a story about a girl that had an accident & was in a vegetative state, similar to Tori's. He worked with her for an entire week, and by the end of that week he had amazing results with her. My friend went to this seminar 2 days ago & she said he was amazing. He travels to Utah, so it might be something to check out. His address & info is: 5601 N. MacArthur Blvd. Suite 200 Irving, TX 75038; office phone 972-580-1156; email@example.com or www.tennantinstitute.com. I hope this helps.
I think about your family often & you are in my prayers.
Tori remains at PCMC tonight but we are hoping and praying it is the last night she (we) will need to be there. Tori didn't sleep at all for Maria on Friday night either and she finally went to sleep Saturday at 1:00pm. She was totally exhausted by that point of course so she slept through Saturday afternoon and night while I was back at the hospital. We have continued to raise her baclofen pump levels during the weekend in 100, 200 or 300 microgram increases. Right now Tori is getting 900 micrograms per day and she will probably get another 200 micrograms tomorrow morning before we try to get her out of there. Her muscle tone and spasticity has definitely decreased but it is has been harder to gauge this weekend because she is still quite lethargic and tired. She is still recovering from being up for so long and she hasn't really been in a 'normal', non-agitated awake state where we can test her arms and legs.
Tori basically slept for most of Sunday but Maria called me an hour or so ago and said she was very agitated again and she even pulled out her G-Tube once more... They placed it back in quickly and we are going to try and get a spare before we leave. They also need to try and make Tori sleep tonight so we can get her back on schedule. She will be completely off again and that is never fun for anyone. We shall see tomorrow how well she sleeps tonight...
My brother TJ, Lorrie and the kids stopped and visited Saturday as well as my good friend Alan. They all agree it is much nicer visiting Tori when she is home and I couldn't agree with them more. I also had a conversation with Tori's rehabilitation physician Dr. Gooch and I now have an understanding on what happened with Tori's lumbar puncture and baclofen test last June. I'll provide more information on that adventure in my next update.
Thanks again for all of the support!!
Tim, Maria, Tori, Whitney and Brendan
It really seemed in the early morning hours of Thursday morning that Tori knew a trip back to the PCMC was coming. She had high anxiety and agitation and stayed up and going until 2:30am... Then we had to wake her up just two hours later to head to the PCMC for her 7:00am surgery. We did eventually make it and Tori's surgery went right on schedule. It lasted just over an hour and now Tori has 5" of stitches on her side once again where the baclofen pump is located and another 3" of stitches on her spine. A new tube and catheter were placed during the surgery. She is sore and getting alot of pain medications at this time.
After the surgery Tori was moved to the NTU (Nuero Trama Unit) on the second floor of the PCMC. She woke up a short time afterward and within an hour we could see she was incredibly tense with high muscle tone in her arms and upper body. Tori was on 1300 micrograms per day and upon placing the new tube and catheter they lower the rate to 100 micrograms per day. They had to do this because Tori was basically getting close to ZERO baclofen into her spine previously according to the rehab physicians... I'm still quite frustrated with this fact because when we had her baclofen levels tested last June we were informed everything appeared to be normal and working correctly. Thankfully during Tori's last baclofen pump refill Amy from the PCMC thought there is no way Tori can be that tense with 1300 micrograms of baclofen and her research into the June results showed there was a misread of some type... I'm still trying to get the details on this and I am wondering if someone just missed a decimal point or what?!?! Tori went almost a year like this?!?! Seems unbelievable... I should probably be more irate than indicated but the staff at the PCMC did save Tori's life several times previously and I have a great respect for them due to this. Right now I just want to put this behind us and keep focused on Tori and getting this baclofen pump working and providing her the benefit she deserves.
I just wanted to give a quick update to let everyone know that Tori's surgery this afternoon was canceled due to another trama patient's arrival. Maria and I made the drive up and as soon as we entered Tori's room we were told the bad news. Rather than wait it out for who knows how long we decided to head back home. Tori is now number one on the list for a 7:00am surgery in the morning. We'll need to leave the house by 5:00am...
I'll update again tomorrow and Tori is doing about the same as she has been for the last little while. She is staying healthy and that is the important thing.
Hi there, this is firstname.lastname@example.org. I have been following your daughters story. I have done this once before and I hope I am in the right spot. Tim, I directly need to speak to you. I am considering the stem cell treatments in China that your daughter received. My son was hit by a truck 7 years ago. I have been dealing with Kirshner. How do I e mail you directly? I also have been praying for you daughter. I feel your pain and also your joy. I appreciate your time...sincerely Janet
Thank you so much for being so open with Tori's experience. It has given me hope as the mom of a very sick infant. Tori has touched everyone's heart but the support for her and your family is so wonderful! If you get a chance please visit our son's website.
Happy Mother's Day everyone!! Especially to all of the mom's out there of course :-) Tori and the rest of us had a nice and relaxing Mother's Day and we ended up going to the Macaroni Grill for dinner with Grandpa and Grandma Schmanski, Todd and Laurie and kids and Guy. It was enjoyable and Tori ended up having bread pieces dipped in vinegar and oil, masked potatoes, some pasta and a little ice tea as well. Still very, very small amounts mind you but at least she is sharing in the eating experience with the rest of us and all of us feel just that much better when she is participating. She was very calm, aware and attentive throughout the long dinner.
Meredyth and Tori had two ST sessions this week and Tori was very active in them once again. Meredyth was using various Star Wars flash cards and was asking Tori numerous about the characters and the movies themselves. Tori was correctly selecting the answers by looking at the correct card. She also seems to be blowing the whistle more consistently when asked and is much more comfortable placing her lips around it so she can blow it. As soon as she masters blowing we'll try the straw again. Still no word on the new PT sessions so we are trying to stretch her ourselves as we can. I'll have to call this week and see what the delay is in getting them approved...
Tori's surgery to replace her baclofen pump line and place the catheter higher on her spine will happen sometime on Wednesday. We are currently unsure if we are spending the night at the PCMC or not and it will probably depend on when she actually goes in for the surgery. Then on July 10th she will have the tendon release surgery completed on both of her ankles at the Shriner's Hospital in SLC.
We had a visit this week from 3 year old Samuel and his mother Teresa Jewkes who are in town during the week for about a month as Samuel is trying some new rehabilitation. Samuel had a near drowning exactly one month after Tori and both of them spent the next many months in the PCMC. We became good friends with Teresa and Tom and have remained in contact. Samuel and family are doing well and Teresa remarked how well Tori looked since the last time she saw her in person. That was probably 15 months ago or so. Samuel has a carepage at http://www.carepages.com. Search for Samuel Jewkes and I believe you will need to create an account. Teresa will be launching another web site for him shortly.
It has been pretty steady and stable with regards to Tori lately. She has been sleeping very well during the night and has generally been calm and in good spirits during the day. Her eating continues to improve and eating a whole applesauce or yogurt is a daily occurrence now. She certainly enjoys having Grandpa and Grandma Schmanski around just as all of us do of course.
I had an interesting call from the Rehabilitation team at the PCMC this week. Tori's muscle spasticity and tone is very high as everyone knows and it continuously puzzles her doctors and us as well. Well it seems that the results of a baclofen test taken last June were misread at that time and I'm now being told that there is a discrepancy. Basically Tori should have more baclofen in her spinal fluid than she does and I'm quite perplexed on how this could have been missed so badly last June... Apparently with the amount of baclofen her pump is delivering she should have much more of it in her spinal fluid and the reduced muscle spasticity and tone that comes with it. The xray's we did on her then did show the catheter is correctly in position but they are guessing there may be 'leaks' in the line leading to the catheter. So Tori will have surgery on May 16th to get a new line and catheter and they are going to be placing it higher up on her spine as well. They are hoping by raising it the baclofen will provide more support for her upper extremities that need it the most. Her arms, shoulders, chest and upper back. We will probably have to spend a night or two in the hospital again. Shriner's still hasn't gotten back to us on her tendon release surgery slated for early June. Needless to say it will be a busy couple of months for Tori and the rest of us as well.
Meredyth continues to do great work with Tori each week and we are having to reset Tori's PT sessions because we lost some of her insurance recently. Insurance battles are constant and I don't see them ever getting easier... Hopefully we'll get Tori's PT sessions going again this week and if not the following week.