December 31, 2007
Michael is doing much better today. He has not had a fever since yesterday afternoon. He has had two IV injections of antibiotics and it seemed to do the
trick. It is Sunday, so there is no therapy.
We have spent an average of $3.00 per day for meals; this is not per person, but for both of us. Our breakfast, if we eat, is muffins or oatmeal bought at
the local supermarket. Our lunch is usually fried rice and diced chicken in chili sauce. We don't eat dinner. Christmas came and went and we did not buy
gifts. The only thing we have bought as a keepsake is a $4.00 hand carved miniature teapot. For those that donated to us, rest assured the money has
been used as it was intended; for Michael.
What a long month this has been, I am glad that it is coming to an end. Nothing against China, but I am ready to get the hell out of Dodge.
Happy New Years.
December 30, 2006
Apparently an earthquake has disrupted the Internet service here, so it is hit or miss.
Michael had a slight fever last night which did not cause any alarm as it was only about 99 degrees. This morning at 6:00, I awoke to start his feeds. I felt
his head and he seemed hot to me. He had a temperature of about 102 degrees. The doctor was summoned and he ordered a chest x-ray and blood
tests. Before the tests came back he was given an injection of an anti-fever medication. I might add at this point that it was not given in his arm.
Dr. Ma consulted with a respiratory specialist because Michael was coughing slightly. During this time, the blood results had come back and his white
blood count was normal; this is a good sign. The two doctors decided that he just has a bad cold. He had more blood drawn for some reason I will never
understand. Michael jerked his arm and the needle tore his arm, so blood had to be taken from the other arm. Another nurse was sent in to take a
sputum sample using a suction pump. She rammed the catheter down Michael's throat and he began to vomit. I rolled him on his side so that he would
Another nurse came in with some medicine. It was OTC Tylenol Cold Tablets. In addition to the meds, he has ice packs on his body to help reduce the
fever. Then for good measure, he was given an IV. His fever broke at about 4:00 PM. Dr. Sh came in to personally check on Michael. He is the top doc
here and a hell of a nice guy. He said that there were some cells that indicated that there is some sort of infection going on. He said that many types of
antibiotics would destroy the immature stem cells, but he knew which ones to use.
Michael has had 5 different doctors in to see him today plus every nurse on the floor. It may have started off a little screwed up this morning, but
hopefully it will end well.
I will update later if the Internet allows it.
The internet has sucked over the past few days. Michael received his final 10 million cells last night at about 7:00 PM. This means he had to lay flat on his
back for six hours which means that we had to stay awake until 1:00 AM in case he decided to roll off of his back. Staying awake was no problem for me
due to the fact I was busy hugging the toilet. Seems hard to believe, but I think I contracted food poisoning. I know it couldn't be the fish head soup, must
have been something else. I'm thinking about not eating again until we leave.
We have a couple of weeks left here and the option of buying another stem cell injection. We will get this one discounted to $3000. It is tempting, but
since we have been on FMLA for the past month, which means we have not been paid during this time, it probably won't happen.
I will update as long as the internet allows.
Michael seems to be in a good mood these days. His eyes are bright and he is always making some sort of noise. He is
much more sensitive when it comes to pain. In the beginning, he did not pull away too much from the acupuncture
needles, now he has to be held down.
Stem cells tomorrow, the final injection.
I had fish head soup for lunch, complete with the eyes.
The staff at the hospital had their first ever Christmas gathering last night. They had mountains of food from both east and west. They had everything
from potato salad to squid pizza. We stuck mainly with the western food, except for some fish ball thing that they insisted we eat. There was karaoke,
games and Santa even showed up to give out candy. Something was a little different about him, he was a little thin and a lot Chinese. The CEO of the
Hospital showed up and was as down to earth as she could be. They presented us with a tea set as a gift and made sure that our plates were never
empty. They treated us like family.
Christmas is not a holiday in China. It was business as usual today, Michael had his morning therapies, afternoon acupuncture, and as a Christmas
present, James gave him an additional workout this afternoon. What kid would not want 50 million stem cells and two painful muscle stretching
sessions for Christmas?
I talked to one of the patients here, the British guy, (see picture), and asked him how the cells were working for him; he has ataxia. He told me that he
had arrived at the hospital in a wheelchair, which surprised me since I had seen him walk around the hospital. He said that his speech had improved as
well as his mobility. Stem cells work, it just takes time; I keep reminding myself of that.
December 22, 2006
Michael slept well through the night, only waking up once. James had the day off, so Jenn gave him his therapies today. Tilt table- 80 degrees for 30
minutes. No acupuncture.
Dr. Sh (Mike) said that in Chinese medicine the coating on the tongue is an indicator of health. He said that the coating on Michael's tongue is not as thick
as it was when he arrived here and this indicates that he will soon "wake up". I love this guy, I think I'll pack him in my suitcase and take him home. I just
hope there's room, cause I'm taking James too.
Michael was scheduled to have his last stem cell injection on Monday, but Dr. Ma rescheduled it for Wednesday since Monday is Christmas. I bet you
can guess what I want for Christmas.
December 21, 2006
I wish I could say that Michael was walking, talking and eating, but he's not. I wish I could say that the stem cells have kicked in and Michael is whole
again, but I can't. I wish that I could say that I see all kinds of improvements in Michael, but I don't.
The healing process is slow, stem cell treatment for brain injury is new, and there are no money back guarantees for us. We are rolling the dice and
taking our chances; who wouldn't? Will Michael improve? I have to believe it with every fiber of my being, it is the only thing that keeps me going. If it
doesn't work, I won't console myself by saying that at least I tried; that's not good enough. I will keep trying until he's better.
December 20, 2006
Michael decided to wake up the 20th floor of the hospital again in the wee hours of the morning. He was very vocal and sounded like he was trying to say
something. I attempted to calm him down by hugging his head, I heard somewhere that it is more effective than Ativan; but he would have none of that.
The nurse came in to see what all the noise was about, looked at me and said "You look tired ", then she left. Can't put anything past these people.
Brought Michael to Physical Therapy early this morning since I was so refreshed from the lack of sleep. James was giving him his morning torture when
the rounds started. Dr. C, whose real name is Dr. Sh, whose English name is Mike, but I call Dr. C, because I'm an idiot, was all excited about Michael. He
said that Michael is showing much improvement and will really improve over the next 3 months.
One of the visitors to this site, Debbie, had this to say about acupuncture:
I do acupuncture all the time and its not painful at all. It does look painful since the needles go in weird places but no pain at all because they inject them
so quickly and the needles are very thin. Its a wonderful feeling when they turn the needles. Its so relaxing and its like getting an internal body massage
instead of getting an external one. It really helps with any pains within the body.
Sounds good to me.
December 19, 2006
40 million stem cells, 10 million to go. I finally unstrapped Michael from his bed last night at 10:30. He seemed glad to be able to move around. He
stayed up for a while and was tired this morning. Being tired does not get one out of therapy around here. James took it a little easier on him today, but
Michael still grimaced and groaned.
There is a tray that fits on the tilt table that is supposed to fit around the patient's chest. This allows them to rest their arms which in turn helps them
hold their head up. The problem is the tray was made for Chinese people not hefty American boys; it is a tight fit for Michael. The physical therapy folks
are modifying it for him.
Michael received a surprise during acupuncture when he had a needle stuck into the tip of his nose. Acupuncture is supposed to help, but damn, it looks
December 18, 2006
The morning started off with the doctors making their rounds. Dr. C. said something about Michael improving on some scale. I didn't understand what
scale he was talking about. I think he was referring to the Glasgow Coma Scale, but I've learned not to ask too many questions because more people get
involved and it gets more confusing. Their English is better than my Chinese, but sometimes that ain't saying much. It's best to shake my head and say
"good." All the tests in the world are meaningless to me, anyway. Even if he scored 160 on an IQ test and he's not up walking and talking, it doesn't mean
squat. I will know when Michael improves just by looking him in the eyes.
James gave Michael his morning therapy and acupuncture. The tilt table went well. 75 degrees for 30 minutes.
Today was stem cell day. It normally takes about 45 minutes from the time Michael is rolled into the transplantation room until he is rolled back into our
room. It was closer to an hour and a half when he returned. Dr. Ma and Dr. Shi said that Michael was uncooperative, he was moving all over the place. He
was given Valium, but it didn't help much. He was wide awake and very active when he came back. He is strapped to the bed for the next six hours.
For those that are unaware of Michael's condition, it is known as Hypoxic Ischemic Encephalopathy. It is not in any of his medical records but he has the
characteristics of a person in a persistent vegetative state. This basically means that he is not aware of his surroundings, cannot communicate, and
does nothing on command. There's nowhere to go but up; that's why we're here.
December 17, 2006
Michael woke up early this morning laughing loudly. I tried to quiet him, but nothing worked. His laughter echoed through the halls. I'm sure it woke the
other patients on this floor, but we have put up with our share of noise from our neighbors so I wasn't overly concerned about it.
Nothing much happens here on Sundays and today was no exception. Tomorrow will be a more active day with therapies and an injection of stem cells.
The most expensive meal that we have had so far is a pizza from Pizza Hut. We were told that it is a restaurant where the wealthy eat. The meal cost 98
RMB which is $12.25 US. Had to come all the way to China to be affluent, but we finally made it; we finally got a piece of the pie.
Not much happening here. Michael receives another stem cell injection on Monday. That will be his 4th treatment. Starting next week he will get an
additional physical therapy session in the afternoon. He will be one tired boy.
Dr. Ma and one of the therapists, Martin, stopped by to give Michael an evaluation. Not sure how he did, my Chinese is a little rusty.
We went shopping and asked the nurses to keep an eye on Michael. When we returned, Dr. C. was the one watching Michael, sitting at his bedside. I am
impressed by the man's kindness and compassion.
December 14, 2006
Michael was finally allowed to get off his back at 9:45 last night. He had been laying in the same position for 6 hours after the stem cell injection. He was
also allowed to receive some water and formula. He had neither for 10 hours. Dr. Ma said that Michael did better for this treatment than the first one. He
kept trying to roll onto his back during the first procedure, but was much calmer for this one. The assisting nurse's only complaint was that Michael was
so heavy and it was hard to roll him on his side. Michael weighs close to twice as much as most of the nurses.
In PT, he was evaluated to see if he is more limber than when he first arrived. They bend his limbs and measure different angles. He had improved quite
a bit. This is probably due to the extreme therapy he is getting. He was on the tilt table for 30 minutes at 75 degrees.
Michael managed to knock 3 acupuncture needles out of place today. He also managed to drive one needle all the way in to his hand, about 1 inch. We
try to hold him down, but when you hold down an arm, a leg comes up. When you subdue the leg, the other arm comes up. Arms and legs flailing around
non-stop for 30 minutes until the needles are removed. It's comical, I guess, unless you're the one doing the holding.
Tip of the day : If you go to China and get a hankering for grits, don't buy Corn Grit, it's not the same; trust me.
December 13, 2006
The day started out with a nurse coming in at 7:00 AM to take Michael's temperature. At 8:00, the doctors made their rounds. Three doctors, a therapist,
and a group of nurses invaded the room. Then it was off to the therapy room for PT. Michael gets one heck of a workout from James. He grunts as he is
pulled, twisted, and turned. This was followed by the tilt-table. After 30 minutes of standing, it was acupuncture time. Some of the needles are inserted
3/4 of an inch into Michael's body. I don't know if it hurts or not, but I don't think I would try it.
He had a lumbar injection of another 10 million stem cells. He has to lay flat on his back for 6 hours so that the spinal fluid does not leak out. The doctor
gave him Valium to keep him calm. He is sleeping now as the nerve growth factor drips into his veins via an IV. I will worry about him for the next few
hours. Who I am kidding? I will worry about him until the day I die.
Staring at the Americans is still a favorite past time for the locals. They literally stop on the street and stare. The older people are the worst about this. I
guess we are quite the sight to them.
I had pork noodles the other day and the noodles were not bad. The pork was another story, last time I checked, pigs don't have tentacles, which my
plate was full of.
Improvements. There has been two improvements with Michael from the first stem cell injection. He no longer drools and he has a daily bowel
movement. To most of you, this probably means nothing, to me they are major advances. When I don't have to give him a laxative or wipe spit from his
chin and considering it has only been a few weeks, I think it's pretty damn impressive. I am very grateful for the progress but I will not be happy until he
is 100 %; I have set the bar very high. I know it takes time and I know that 20 years ago, this technology would not have been available to us, but I also
know what it was like to have a normal healthy son for over 13 years.
December 12, 2006
We are trying another new formula for Michael. It will cost us about $15 per day, but we have no choice; he has to eat. When he gets better, he will be
cutting my grass until he is 106 years old to pay me back for all that I have spent on him.
Michael had his physical therapy, followed by the tilt table. The table is now at a 70 degree angle. He stands for 10 minutes, rests for a few minutes, then
up for 10 more minutes. He repeats this 3 times. He had 6 needles in his head, 4 in his face, 4 in each hand, 2 in each arm, 3 in each leg and 2 in each
foot during acupuncture. The needle that goes between his nose and upper lip seems to be painful, most of the others he doesn't seem to mind too
The communication is improving around here. Everyone is finally talking to everyone else and our issues are being addressed. The squeaky wheel, I
December 11, 2006
Sorry about the slow updates, but not much goes on around here. Michael has 2 hours of therapy per day and that's about it. We have not seen the sky
since we have been here as it is alway foggy. The hospital is sort of downtown but is surrounded by apartment buildings. With 1.3 billion people in China,
there are a lot of apartments. The supermarket/department store is about a block away and there is what appears, a nuclear power plant about a half
mile away (it is hard to tell because of the fog).
The nurses take Michael's temperature twice a day and blood pressure once, that's about it. We hardly ever leave the hospital because I hate to leave
Michael alone. When we go to the store, we ask the nurses to keep an eye on him. There are no monitors attached to Michael and unless you are in the
room, you would not know if anything was wrong. I did not like that. Taking Michael with us is not much of an option because of the busy street we have
I have read the blogs posted by people that are at the Shenyang and Shenzhen Hospitals and it seems to be much better at those locations. This is a new
operation here in Hangzhou and there are many issues that need to be addressed. The language barrier is not that bad, but there is still a big
communication gap between the doctors, nurses, Beike representatives (the liaisons between the patients and staff), and us. The lack of
communication is not due to the English-Chinese issue, they just don't communicate. It gets frustrating sometimes, but I will make sure that Michael is
not affected by it.
We have not eaten in at any restaurants ; we order or take our food out. I have not left the hospitals in 3 days.
They have a washer/dryer combination here that takes an average of 4 hours to do a load of laundry. The machine is in use 24 hours a day.
There are no dogs, cats, or birds to be found here. I know that they eat pigeons, not sure about the other animals. It is not a fun place to be, but we are
here for one reason only and that is Michael.
I will try to update more often, but as I said, there is not much to say.
December 7, 2006
The day started off with some excitement. We get Michael's formula from Nestle's. They are a Swiss company which only provides certain formulas to
certain countries. The kind that Michael uses is 500 calories per can and is not available in China. We could not bring enough formula with us due to the
weight, so we ended up getting some from a Nestle's distributor here in China. The problem is that it only has half the calories and is in powder form.
They wanted close to $1000 for a 5 week supply. We opted to buy just one case of it to see how it worked out. Good thing that we did, because Michael
did not tolerate it very well and began spitting it up. We had a suction machine, so we rolled him on his side and took care of the problem. Those of you
that are not familiar with hospital beds ( I hope that you're not), know that they are on wheels. If you do not lock the wheels when you are rolling a 150
pound boy that is fighting to stay on his back, you will not succeed. Luckily, I had locked the wheels earlier this morning. A little while later, he began to
spit up again, I went to use the suction pump, but there was not any power; we had kicked a breaker. It took 15 minutes before power was restored and
we asked for another room that had vacuum and oxygen on the wall. They took care of us and they are going to see what they can do to come up with
some formula for Michael.
Yesterday we went to the R/T Mart to get a few things and went through the meat section just to look. They have live fish in aquariums, live turtles in nets,
and live frogs for the picking. It was like being in a pet store. They are in the process of putting up Christmas trees and there is American Christmas
Carols blasting over the PA system. Not bad for a country that is predominantly Buddhist.
We are usually up at 4:00 AM, not sure why. The nurse comes in at 7:30 to check his temperature. It usually reads 36.8 degrees, which is normal. Of
course they measure in Celsius here.
The people here have English names as well as Chinese ones. They do this because foreigners have a hard time pronouncing their names. These names
are listed on their ID badges. For instance, one of the nurses, Phu Cho Chi, has the English name of Jerry.
James is Michael's therapist. He does it all- OT, PT, and acupuncture. It is like watching an artist when he performs acupuncture on Michael. With a flip
of his wrist, he twists the needles as he jabs Michael with one after another.
These people want so much for Michael to get better. They are a very caring group and we could have done a lot worse.
December 5, 2007
Michael woke up in the early morning hours laughing and raising quite the ruckus. He seemed to be in a really good mood. Stem cell injections usually
cause the patient to have a headache and run a slight fever; Michael did not have a fever and showed no signs of a headache.
The day started with therapy where Michael received a good range of motion work out. This was followed by the tilt table for 20 minutes. After a break it
was on to acupuncture. He had a total of 23 needles in his head, face, arms, and legs. He didn't like it at first, but relaxed after about 15 minutes.
No noticeable improvements today, but it has only been a day.
A Few Things
We had stares from everyone as soon as we hit China. They were not casual glances, they were long stares. They seem to be particularly interested in
The nurses dress in the old time nurse's uniform, complete with the hat. The thermometer that they use is the old mercury filled glass variety. The blood
pressure machine is a mercury filled unit as well. They are very friendly and love to help. They will do everything that they can to assist.
Food. We had fried rice and soup. The meal did not come with forks or spoons, it came with chopsticks instead. Imagine that, chopsticks in China. The
rice was like the rice found at any Chinese restaurant in the US. The soup, however, was some sort of broth with some creature on the bottom; mine
moved. After flushing the soup, we ordered from Pizza Hut. The pizza was the same as any other Pizza Hut except for the fact the delivery guy must use
a scooter or bicycle for transportation and must have been hit by a truck because the pizza was squashed over to one side with the toppings helter
skelter throughout the box. We ate at KFC and it was OK, except that the chicken breast sandwich contained dark meat.
The young people speak English well which really helps. We have tried communicating by waving our hands, pointing at things, talking slowly; you know,
being typical foreigners, with little success.
The department store here has almost anything you desire, from whole chickens hanging by their necks to eels. The meat is fresh and none of it is
packaged. Everything is just laying there. If you want a fish, you grab the whole thing and stick it in a bag. Seemed like everything had eyes. The prices
are very reasonable.
The soup aisle consists of nothing but various types of ramen noodles; no Campbell's here. The imported foods section contains things like popcorn.
The traffic is something else. Crosswalks don't mean much here. We were told that chances are they would not run over a foreigner for fear of going to
jail, but we are careful just the same.
The Stem Cell Transplantation Room has a frosted sliding glass door that opens up when the proper code is selected on a keypad. Yesterday I watched
as they wheeled Michael in and the door closed behind them. Very ominous.
We are located on the 20th floor of the hospital which offers a good view. The downside is the elevator ride. It takes about 15 minutes to go from the 1st
up to the 20th. There are just so many people and the elevator stops at every floor, or so it seems.
December 4, 2006
Today was a busy day; it started off with physical therapy. Michael stood on the tilt table for about 30 minutes. While on the table, a dermatologist
stopped by to look at his psoriasis. Michael developed this skin condition after he drowned. All kinds of strange things occur in brain injuries. The Dr.
said to stop using the American medicine that we were using and he would give him some Chinese meds. He lived up to his word and came up with 4
different kinds to use.
Stem Cells. Michael was sedated with Valium for the procedure and woke up right after the 45 minute procedure. He was supposed to lie on his back
for six hours without moving. He was lifting his head and legs trying everything he could do to get up. We had to strap him down to the bed until he went
to sleep about an hour and a half later. His IV that was administrating the nerve growth factor clogged and they had to put in another one.
Tomorrow he will have acupuncture and therapy. He will not get another stem cell injection for another 5-7 days. God, I hope we see some
December 3, 2005
Absolutely nothing went on today. Michael fell asleep at about 3:00 PM and has been sleeping ever since. Tomorrow he will receive his first stem cell
injection followed by an IV containing nerve growth factor. This should all start at about 2 or 3 in the afternoon. I will post as soon as it is done and let
everyone know how it went. Remember, we are 14 hours ahead of those in the Central Time Zone.
December 2, 2006
Michael has a Baclofen pump that helps prevent muscle tightness. The pump is implanted in his abdomen and a catheter is routed internally to his spinal
cord. The catheter was attached through an incision in his back. A baclofen pump is kind of unknown here in China. His Dr. was not sure about injecting
cells into his spinal cord because he did not want to risk piercing the catheter; He was thinking about doing an IV instead. Spinal injection is the best
way. I emailed Brenda and she called Michael's neurologist to find out more information. He told her that the injections could be given below the
catheter. I passed this on to the Dr. and he has decided to do spinal injections. One step closer.
They are just getting set up on this floor and are not used to dealing with people in Michael's condition or stature. We were told that most of the staff is
used to treating Chinese patients; which are normally smaller people. There is no Hoyer lift, shower chair, and the showers in the rooms will not
accommodate larger people. We are making recommendations to help the future patients.
This place is very similar to Children's Healthcare Of Atlanta (CHOA), where Michael spent a couple of months for rehabilitation. The parents basically
take care of their child and the staff assists as needed. Weekends will be slow here, so we took advantage of the time to give Michael a shower and put
him on a tilt table.
The Internet connection here is slow and intermittent. If you don't see an update daily or I did not respond to your email, it is due to this.
|Merry Christmas from China
|Dr. Sh (Mike), Dr. Shi, Dr. Ma, James, Sid
|James, Nancy, Dana, Judy
|Dr. Sh (Mike), Dr. Shi, Dr. Ma, James, Sid
|Jenn, Romanian Kid
|New Nurse, British Guy, Romanian Kid, The Other New Nurse