Monday through Sunday, April 30th through May 6th
Hello again,
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.
Thank you for the continued love, prayers and support,
The Schmanski's
baclofen pump
Justine's pump only lasted 4 months. I was in shock after the surgery. It looked like she had swallowed a can of tuna. It stuck so far out. Medtronics was there during the placement and came out raving about how the pump was placed. But it eventually started to cause the skin around the pump to break down. The plastic surgeon that had to remove it and repair the skin surrounding the pump said he would make sure it was placed in a pocket between the muscles. Another thing we found out after she got the pump placed she could no longer propel her scooter or her walk about because she had learned to use her tone to move. So when you took that tone away she was floppy. She had never been so relaxed though. There were pro's and cons to her having it. jodi - justine's mom
baclofen pump: catheter tip placed at C5 will help upper body
Hi Tim,
Thank you for responding about Tori's baclofen pump. I hope everything goes well and improves after her catheter replacement. I have been doing lots of research and talking to many people with pumps. The best information I received was from a lady who had a stroke 5 years ago and now has a pump. She too has a lot of upper body spasticity. She told me that her neuro surgeon said if the catheter is placed so that the tip is at C5 it will help a lot more with upper body spasticity. I thought this was some good info to pass on to you (even though you may already know this). If my husband ends up getting a baclofen pump this is what we are going to push for since he suffers from more upper body spasticity rather than lower body. I hope all goes well with the surgery!
Lora
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