Tim Schmanski's blog

Monday and Tuesday, February 5th and 6th - Day 24 and 25 in Hangzhou, China

Ni Hao everyone,

At least I have learned some basic Chinese while I've been here but everyone chuckles at my pronunciation of course. Hello! = Ni Hao!, Good morning! = Zao Shang Hao!, Good evening! = Wan Shang Hao!, Good night! = Wan An! and finally Thank you! = Xie Xie! Hey?!?! I'm trying just like they are trying English so it keeps us all laughing most of the time :-)

For Monday and Tuesday, Tori has been on her normal routine of PT in the morning followed by acupuncture and EMT in the afternoon. She looks and feels good the vast majority of the time and Maria thinks she is more alert and quicker in her response times. I believe she has much more control of her arms and hands. During the medical staff inspection this morning I asked and mimicked for her to demonstrate some of her new movements. Her right thumb to her nose, ear, chin and forehead. Everyone was excited and she giving out 'thumbs' all around!! It's somewhat of a 'high five' I guess as Tori likes to extend her thumb to touch yours. Of course we've also dubbed this movement either 'thumbs' or 'thumbing' :-) James was ranging Tori's right knee during PT today and measured a 65 degree bend in it!! Remember, it was only 7 degrees when we arrived and when Tori is resting in her wheelchair now it can easily rest at a 45 degree angle. Instead of having both legs extended in her wheelchair we are now extending the right one much less than the left. James basically has five days left before the final measurements will be taken and the improvement marked. We want to range Tori again when we return home at the PCMC because they have their measurements prior to us leaving. I know they will be quite impressed with her progress on this front. Now we just have to keep it up when we return home...

We always joke with James because his English is the most limited of the bunch here. We're still trying to bribe him into coming home with us by offering room and board at our home and access to the beautiful American women that are all over town :-) We can certainly make him blush especially when there are others who can translate around because they also enjoy ribbing James as much as possible.

Saturday and Sunday, February 3rd and 4th - Day 22 and 23 in Hangzhou, China

Hello all on Superbowl Sunday!!! :-)

Fortunately for us, as satellite dishes are illegal in China, I have found some CBS internet video streaming sites so we'll be able to watch the game on my computer at 7:30am Hangzhou, China time. We'll have to set the alarm to wake up of course ;-) A Superbowl breakfast party?!?! Ok, we can try it once :-) We'll also have the game Tivo'ed at home in case we want to watch it again I guess.

Tori continues to do well as she has been calm and basically not agitated during the days and entirely sleeping through the nights. Saturday she had her normal rounds of therapy with James. PT in the morning followed by acupuncture and EMT in the afternoon. It didn't seem like she was as bothered as much during the PT as James went through all of his stretching routines. She didn't cry, scream or grimace nearly as much as usual but that just might have been due to her good mood I guess. If she can maintain that attitude for several PT sessions then I'll be impressed. When James is working with her fingers he can now place them in a totally extended and straight position without having Tori go ballistic. She even tends to keep them in that position for a little while after stretching but her brain eventually causes them to slip back into the curved wrist and fist position... Tori's brain is still sending signals to her muscles to 'clench' pretty much at all times. The tightness may vary but she is still continuously 'clenching'. Tori is now doing slightly controlled lifts of her legs when she is focused. We keep working on this by having her try to kick our hands when placed over her feet. Electrical stimulation on the acupuncture needles placed in Tori's limbs has been going on for a few days as well. This is designed to help her movement as well.

We are also trying to keep Tori eating each day. Usually a yogurt and pieces of a banana. One of our challenges has been getting her to close her mouth and lips around a spoon to take the contents off when it is pulled out. This has always been very hit and miss but she was able to do this very well in four consecutive bites last week!! I would still like to see greater quantities of food going through her mouth though and we'll keep trying of course!!

Friday, February 2nd - Day 21 in Hangzhou, China

Hello again,

I wanted to provide a very quick update today to let everyone know that has Tori uneventfully and successfully received her fourth SCT!! She had the stem cells delivered through a spinal injection and through an IV. She is still resting on her back watching a movie as I am creating this update and at this point she seems to be completely over her cold. She slept the entire night and she was in very good spirits all day today. She also had a great PT session this morning with James as well. Since she had the SCT today, she had no afternoon therapies as in acupuncture and EMT. I'll post a more comprehensive update this weekend with exciting information I have learned from other patients who are here.

Thank you for the support!! :-)

-Tim, Maria, Tori, Whitney and Brendan

Wednesday and Thursday, January 30th and February 1st - Day 19 and 20 in Hangzhou, China


The good news for Tori continues as she appears almost totally recovered from her illness!!! :-) We still haven't heard what the sputum cultures have grown but it doesn't really matter at this point. What really matters is that Tori is sleeping through the night fine once more, coughing very little and clearing her throat nicely herself, having little agitation and having a normal and constant 36.8 degrees Celsius temperature. Everything is on track for her forth SCT via spinal injection and IV tomorrow!! :-)

Tori's run of the Azithromycin and Cefotaxime antibiotics will end tomorrow morning as well. We have had to alter her therapies for the past several days as she is getting her antibiotics intravenously each morning. So at 10:30am, James has been coming into Tori's room and providing acupuncture and EMT until noon. We then take Tori to the rehabilitation room for her PT session at 3:30pm. We believe Tori likes this schedule better as well because we don't have to rush to get her ready in the morning and maybe because James is more tired in the afternoon and can't work her as hard. I'm just kidding on that one as James always has plenty of energy and Tori knows or even dreads it!!... ;-) We have also stopped having Tori do the stander as it was obviously too painful for her and I doubt she was receiving an appropriate benefit from it... Since her left foot won't move into a standard position she was standing on her toes lightly and placing the majority of her weight on her right foot. Our plan is to get tendon release surgery on that left foot once we get home before placing her in a stander again. So James is now using that time to provide more massage treatment for Tori and she likes that much better anyway :-) We had Tori listening to an ipod during today's PT session and it seemed to take her mind off the therapy itself a little more. James also made her take notice of her right knee as it is now bending greater than a 45 degree angle!! Her left knee is improving as well but seeing her right knee bending like that again is really impressive. The post SCT and rehabilitation measurements they will take again before we leave should be very interesting as well especially when compared to the previous measurements taken when we arrived.

Tuesday, January 30th - Day 18 in Hangzhou, China

Good evening from Hangzhou,

Tori didn't get the good rest we had hoped for Monday evening and early Tuesday morning... She was pretty much up all night and I was as well trying to keep the phlegm in her lungs suctioned out. She wasn't really coughing at all to clear it herself as she was too weak to do so. We kept her on numerous medications including motrin, zanaflex, xanax and even ambien to try and keep her calm and to possibly help her sleep. It didn't help too much though as she kept building up phlegm in her lungs and was 'rattling' all night... We watched her blood oxygen level and temperature closely and she maintained 90% and above on her oxygen and her temperature was usu sally floating around 38 degrees Celsius or 100 degrees Fahrenheit.

By 8:00am Tuesday morning she was so exhausted she finally fell asleep. I suctioned alot of phlegm out of her during the night and at least she was sounding pretty clear before sleeping. The medical staff came by on their rounds at 8:30am and they took a sputum sample and ordered for Tori to start on two antibiotics which are used generally in China. They are Azithromycin and Cefotaxime and are broad spectrum antibiotics. So the combination of the two should cover a wide cross section of bacteria that is common in China and in this hospital and we will run three days worth. In the USA we would typically use Keflex, Levaquin and Zosyn on Tori for the same reasons. The last time Tori was in a condition similar to this was last July at PCMC (Primary Children's Medical Center) and we never did identify the bacteria through sputum samples that caused the condition. And that has happened previously with Tori as well so I prefaced the medical staff here of those occurrences. Our thoughts now are that Tori basically has a common cold which normally will last three to five days. We need it to be closer to three or four days because Tori's rescheduled SCT treatment is now slated for Friday afternoon...

Sunday and Monday, January 28th and 29th - Day 16 and 17 in Hangzhou, China

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.

Friday and Saturday, January 26th and 27th - Day 14 and 15 in Hangzhou, China

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.

Wednesday and Thursday, January 24th and 25th - Day 12 and 13 in Hangzhou, China

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!! :-)

Monday and Tuesday, January 22nd and 23rd - Day 10 and 11 in Hangzhou, China

Hello all,

Tori was 'wound up' and agitated quite a bit Monday morning and we had to give her a xanax and zanaflex dose to calm her during the PT session with James. Since she had her second stem cell treatment scheduled for later in the afternoon we opted not to perform any strenuous PT on her during the morning session. It basically turned into an hour and a half 'massage fest' for Tori and she really enjoyed it of course. We don't want her to think she can get away with that everyday though ;-)

Tori was late getting into her stem cell treatment as they had issues with other patients throughout the day. She ended up entering the sterile surgical room at 5:00pm and returned to our room at about 6:15pm. The procedure went well according to Dr. Shi and Tori slept for 3 hours afterward while the IV based NFG and stem cells were administered. Then we created her 'vertical movie environment' and she watched two movies with headphones on while lying flat on her back. The second one was the 'Ice Princess' which is one of Tori's favorites. After we started it, Tori softly then loudly began moaning and 'aaahhh'ing for our attention while looking at us as well. It turns out the volume to her headphones was accidentally turned off and she was just letting us know. Once it was turned on she was calmly watching once more. It's small signs like that which constantly remind us that she is indeed 'in there'. We didn't elevate her again until about 2:00am and she slept very soundly the entire night.

Tori's temperature on Tuesday was a little high once more at 37.4 degrees Celsius but by the end of the day it was back down to normal or 36.8 degrees Celsius. That trend will probably continue after each stem cell treatment. James really worked Tori hard during Tuesday's PT session because Tori had about three days off. Tori was screaming quite loudly as James worked on her knees again... James decided to do a range measurement on her right knee and it came in at just over 40 degrees so I was very close in my 45 degree estimate from the last update. Her first measurement on the second day we were here was 7 degrees so that is quite an improvement!! James didn't want to measure her left knee as he wants more time on it. Tori then went in the stander again for two 5-10 minute raises of 52 degrees.

Saturday and Sunday, January 20th and 21st - Day 8 and 9 in Hangzhou, China

Hello again,

Tori ended up sleeping almost all Friday afternoon and Friday evening as well. When she woke up Saturday morning she had a slight fever of 37.1 degrees Celsius or close to 98.8 degrees Fahrenheit. Normal body temperature for humans is 36.5 degrees Celsius or 98.6 degrees Fahrenheit. This varies slightly according to such factors as the individual, the time of day, state of metabolism and physical activity, and temperature of surroundings. With Tori's anoxic brain injury and the increased and ever constant muscle tone associated with it, Tori usually runs a little warmer than the rest of us. She normally hovers around 37 degrees Celsius or slightly under. I've been trying to communicate this to the doctors and nurses here and I think they finally understand but Tori definitely did have a slight fever and that is typical after the stem cell treatments from what I've been told. By noon on Saturday her temperature was back to her normal range and it has been there ever since. A fever of 38 degrees Celsius or above would not be good as it might cause harm or destruction of the stem cells that were placed... So we are continuously monitoring Tori's temperature to say the least.

We also keep our room temperature on the cooler side for Tori and ourselves and we are very comfortable at about 72 degrees Fahrenheit or just over 22 degrees Celsius. Tori usually has a sheet or blanket in addition to her clothes and is fine. I walk around in the mornings and at night with basketball shorts, a t-shirt and slippers and Maria usually has pajamas and slippers on. It's funny because the medical staff here believes we are just crazy!! :-) Thinking back when I was chased around by three nurses carrying a blanket and with the concern viewed daily here, we finally figured it out and it is because they all have the typical misconception about temperature causing or influencing the common cold. A Google search on 'common cold myths' and I quickly found this accurate explanation:

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