James got a few extra 'smile enabling' needles in while Tori was fast asleep. He couldn't have done it otherwise...

Hello everyone,

It appears that Tori has hit her first 'bump in the road' during her China SCT journey... Tori woke up Sunday morning and was extremely agitated and down right angry it seemed. She had also worked her temperature up to 39 degrees Celsius and her heart rate to 150 beats per minute so we gave her a full inderal and xanax to calm her. She also has some 'rattling' or phlegm in her lungs and you can hear it well when she is breathing. She is coughing is up as needed but it appears she may have aspirated some of her saliva or something else. It could also have been from the extra food she has been eating through her mouth but she has been chewing and swallowing it very, very well and I have been watching her quite closely during eating periods. So we're not sure when at this point as she has been doing absolutely fine up until now. Her blood oxygen level is still in the mid to low 90's at the least. Perhaps this is a gentle reminder to us on just how quickly things can change with a brain injury... We really don't need any more reminders though... She calmed down after the medications but her temperature and agitation level fluctuated all day with temperatures ranging from her normal 36.8 degrees or so to 38.5 degrees and then back down again. Right now, her temperament is responsible for the fluctuations. If she were to consistently stay at 39 degrees then we would need to be concerned of a fever and then decide an antibiotic approach of some sort. A sputum sample would be needed first so we can begin to grow cultures. We kept her as calm and comfortable as possible during the entire day Sunday but she was miserable to say the least... :-(

Sunday night went well though as she slept nicely through it. On Monday morning it appeared she had improved but her temperature was still wavering between 37 to 38 degrees. We attempted to keep her cool and relaxed all day prior to her stem cell treatment and she was right on track right up to her scheduled time. The problem was that it was a bright, sunny and warm day and since Tori's room gets direct sunlight in the afternoon it turned into a sauna quickly and of course Tori's temperature and agitation increased as it normally does when she is in a warm or hot room... We tried opening the the windows and doors to cool it off but it didn't work. She was a solid 38.5 degrees when they wheeled her into the sterile surgical room and where they waited a little bit before deciding she was too warm to proceed... I agreed with the decision as we can't jeopardize Tori's safety and health and I don't really want 10 million new stem cells to be destroyed as soon as they enter her body either... So now we need to reschedule for SCT number 4 and try and get Tori's health back on track.

Hello again,

Tori's stem cell treatment on Friday was through the IV only so there was not a spinal injection this one time. Tori's next stem cell treatment will take place on Monday afternoon and there will be a spinal injection and an IV placement of the stem cells. Her IV of stem cells and nerve growth factor began Friday around 2:00pm and Tori immediately fell asleep. In fact she slept until about midnight and then she was wide awake... She thankfully let Maria and I sleep though while she watched several movies calmly and alertly. She would only make vocal sounds to let us know her movie was finished and when she needed another one so it wasn't too bad. Saturday morning Tori was agitated and worked her temperature up to about 38 degrees Celsius so we had to give her some medication to calm her and lower her temperature once again. The nurses still have a slight tendency to declare a fever anytime Tori's temperature is high so we just tell them to come back into the room after an hour or so and she will be back to normal. This has worked every time!! :-) Tori had only a slight nap today and has been watching a bonanza of Harrison Ford movies tonight with Maria. It is just after 9:00pm here now and Tori's eyes are finally beginning to close. I believe we all have a solid night of rest tonight.

Our latest awareness game during Tori's PT sessions is to have her find people by their names. Jenn, Tina, Wendy and of course any of the nurses in the room who happen to be there. The big joke is that Tori can always find James because she just has to look where it is presently hurting :-) We're still working on getting some velocity and power behind her right handed punch as well. The velocity is the hard part as once Tori makes contact with her fist on James she can push quite hard already. I am always present for Tori's PT sessions and assist as well and I personally see with each day improved range of motion on basically all of her joints. Some are better than others and her left ankle is still showing the least improvement... It will definitely need tendon release surgery upon our return to Utah. The stander is a challenge for Tori as well and it is all related to pain in that left ankle and foot when it is bearing weight. Tori's muscle tone and tightness was back during the past two days and was very unlike last Wednesday when she had extreme 'looseness'. James was sweating once again while giving Tori PT during the past two days.

Bund nightview of Christmas, 2002

4 years ago

Tim wanted to let you all know that there is an Internet access outage at the Hospital.

He may not be able to provide udpates for a few days. He will let us all know once he is online again.

Thanks and a great day to all of you,
-Guy

Hi everyone,

The sun finally appears the day after I complain about not seeing it since we have been here!! :-) We then took advantage of the sunshine and went into downtown Hangzhou and I will describe the experience later in this update. But now I will focus on Tori and her progress. Tori appears to be well adjusted to her schedule and our time change and generally sleeps through the entire night and has an afternoon nap after acupuncture and EMT.

James continues to push her greatly during the PT sessions and we have been giving Tori some Motrin the past few nights to help her with joint and muscle pain. Tori's muscles were extremely 'loose' during the Wednesday morning PT session. James was able to move her arms, wrists, hands and fingers in directions that didn't seem possible before. He kept asking me if I gave her any extra medication and I assured him I hadn't given her anything. So he took advantage of the situation and got some really great stretching in!! :-) Tori didn't stay loose for long though because when James started on her troublesome knees and ankles she became very tight, vocal and grimacing during the stretching once again... She continues to use the stander after each PT session and lasts for about 5-10 minutes at 52 degrees before she can't tolerate it anymore. It is her left foot that becomes painful and I know if she could stand on it correctly like her right foot she could do much better. She does acupuncture and EMT in the afternoon. The PT session has been great lately because Jenn is also helping James so Tori gets double the attention for 1.5 to 2 hours. The Chief Neurologist of the Xiaoshan Hospital visited Tori today and he asked me about her improvements since the stem cell treatments so I told him what we have been observing so far. I believe at times, Tori has more control of the muscles in her arms and hands and she has demonstrated this by doing new movements for us. I also believe Tori's muscles are 'looser' more often than they were previously. Before, Tori had tight and flexed arms and hands almost 100% of the time unless she was sleeping. Now I would say there are more times when she is fully awake and her arms and hands are quite 'loose'. Again, nothing scientific to really prove the observations and perceived improvements and we don't know if they are related to the stem cells treatment directly, the therapies or a combination of both. It's ALL so good for her!! :-)

Here is Tori trying to feed herself a cookie!! :-)

Ouch!! The needle amounts are increasing when doing acupuncture on Tori's knees...

Here is Tori watching movies on her back after Stem Cell Treatment number 2.