Monday, July 30, 2012

Brian's first acupuncture session

News of the new

Well, it's been difficult getting good connectivity to the internet. Hence blog updates have been sporadic. But I see that the last few days' worth of updates finally made it through and posted here. Apologies for duplicates.

Anyway, there's lots to tell you. After Brian's lumbar puncture, he did fine, other than a little fever which the nurses worked to keep down for a day or so. He got IV fluids and lots of cool towels. Strangely, the doctor that frequently visited insisted that the room be kept hot (like around 27 degrees C/ 81 degrees F)! None of us really saw the logic in that, but hey, it's a different country with different ways.

Brian has been doing quite well with his therapy. In fact, Beike offered to send him along with Grainne, Shane and Sean to a facility in Qingdao, China! There he could receive even more advanced physical therapy, along with acupuncture, massage and occupational therapy to round out his stem cell therapy even better. We asked Brian if he wanted to go and he happily said yes, so Sunday evening we quickly packed all our things and headed to the airport. Beike paid for our four tickets, but Nevis and Jonathan wanted to come too, and they very generously not only accompanied us, but paid their own way even though they have to head back to Ireland on Wednesday!

After an hour-long flight on China Eastern Airlines (quite nice), we were greeted by two of our patient coordinators, Zora and Charlie who drove us back to the hospital Brian would stay along with whoever's turn it was, and also to the hotel nearby (a Holiday Inn!) where the rest would spend the nights. As soon as we arrived the nurse and attending physician, Dr. Alina, interviewed and assessed Brian very thoroughly. That is, of course, until the doctor passed out. Literally. She fainted right there in Brian's room. None of us knew what was going on. It turns out she was pregnant and had a sudden severe bout of morning sickness right at that moment. Poor thing was mortified!

So here we are in Qingdao, China, about 500 miles southeast of Beijing, right near the coast. We'll continue Brian's stem cell treatment here and his increased regimen of attendant therapies. He's excited to be here, as are the rest of us. Quindao is a beautiful city, not as overwhelmingly massive as Beijing. Every street seems to be lined with well-kept gardens. Brian is in the VIP room on the 8th floor of the hospital. We're happy to say that Farhan and Anita and their daughter Zahra from USA along with Juan and Carolina and their daughter Gaby from Colombia are here too! It turned out that the children needed anesthesia for their lumbar puncture, and there wasn't staff specialized enough at the hospital in Beijing to perform the procedure, so Beike flew them out to Quindao too! It's like our little family is reunited! Sadly, though, with the joy comes some sadness. While we are here in Quindao, we had to leave behind our beloved other family members, Claudio, Daniela, Brisa and Nacho from Argentina and Jowad, Baidaq and Sirer from Iraq. Below is a picture that Baidaq sent along with an email that made us cry. It's painful to be separated from those whom you've grown to love and care for, and our little China family is evidence of that. We with them all the best, and we miss them very much.

Hopefully we''ll be able to keep a decent bit of connectivity to keep the website updated. Again, apologies for the delay and for the duplicate entries. Brian is doing well, and if you'd like to write to him, we read him his fan mail daily! Send emails for Brian to either lovenola@gmail.com (Grainne), shanehogan40@hotmail.com (Shane) or sfitzmorris@gmail.com (Sean).

More soon!

Quindao (purple marker) in relation to Beijing (blue marker)

Brian's new hospital in Qingdao
Leaving Baidaq, Claudio and the rest of our new family is sad for all of us.
Corn flavored lollipops? They're actually pretty good.



Sunday, July 29, 2012

Friday, July 27, 2012

Fwd: Team Ireland joins forces with Team Iraq

Baidek from Iraq apparently representing the Iraqi/IRA terrorist union. He already blew up the kitchen setting a pan on fire! 




Our little group

> And Ignacio from Argentina. Everyone calls him Nacho. He's two today!
>

Sorry we missed a couple days of updates...

Apologies for the last couple of days. Sean's laptop finally died of
an apparent lightning strike. Grainne's is still working fine,
thankfully, but we've had problems with connectivity.

Let's see, where were we? Oh yes, Brian has been getting physical
therapy twice a day every day. His left arm & leg have definitely
improved in their flexibility and range of movement. He's very happy
with the progress he's made so far. Brian's still a little nervous
about getting IV's and lumbar punctures for his stem cells, and of
course we can't predict what effects they will have on him, so his
trepidation is understandable.

Wednesday, Brian had a minor accident. While sitting on the toilet,
the seat detached and slid off with him in what Brian described as a
"slow slump." He didn't hurt himself, fortunately. He was annoyed but
also laughed about it. The rest of us, when we discovered he wasn't
hurt, were all trying to stifle our giggles at the sight!

Thursday marked the arrival of Jonathan and Nevis! Yay! Shane and
Grainne went to the airport to meet them and Sean went to physical
therapy with Brian that morning. They brought tons of treats and
goodies from home, for which we are mightily thankful! Real coffee!
Taytos! Chocolate! Cup of Soup! And duty free liquor! Real coffee
does't exist in the part of China we're in. And while they do have
potato chips ("crisps" to all the Europeans), they're flavored...
well, shall we say... oddly. Cucumber flavored crisps. Cabbage flavor.
Pork flavor. Seaweed flavor. You get the idea. Beer and wine are
plentiful here, but we've yet to see any sort of liquor besides the
local spirits which tastes something like a cross between raspberry
and drain cleaner. A proper cocktail or two was most welcome!

Thursday night was a party that all the families threw. We ordered
pizza (which was quite good!) and we had chicken wings (also quite
good!). Everyone had a terrific time, and it was a great welcoming
celebration for Nevis and Jonathan. The children had a ball with
balloons, toys and games. We taught some of the others how to play
blackjack and spent the evening having a much-needed night of
relaxation.

Today is Friday. Yes, the day Brian gets his second and third
injections of stem cells! The staff came in bright and early with the
UV sterilization lights for his room and applied numbing ointment to
Brian's arm at the IV site and his lower back at the lumbar puncture
site. He got a some IV Valium for a bit of sedation before the lumbar
puncture. Dr. Joa (I think that was her name) performed the procedure
and injected the stem cells. It was done in less than half an hour.
After that, Brian received the IV stem cells, and at the moment he's
lying flat on his back for six hours, which is necessary after a
lumbar puncture. He's taking a nap, but he doesn't have any untoward
side effects we can note, other than a little tenderness at the
procedure site. He's doing fine.

Tomorrow we may go into Beijing. We'll see how Brian does the rest of
today. Nevis and Johnny are excited to be here, though they haven't
seen much of China yet (the medical complex where we're staying could
be anywhere). Later we'll take them to the Lotte Mart and see what
they think of that!

Stay tuned!

Lumbar puncture

We couldn't stay in the room, so we took this through the transom above the door. Shhh, don't tell!

Yep, that's purple bread.

Reunited!

Brian, Jonathan, Nevis, Grainne & Shane.

Tuesday, July 24, 2012

Scorpion on a stick? Who's hungry?

From Grainne's trip into Beijing yesterday. Pick your scorpions to fry up.

Corrections

After sending the previous update, I must apologize for the numerous spelling errors and typos evident in it. I'm quite the grammar nazi, and it galls me to no end that so many typos were allowed to slip my notice. Nonetheless, I'm sure you get the ideas. I'll blame it on Grainne's new keyboard and its rather haphazard arrangement of keys, along with the Chinese local liquor available for three dollars. Thanks for your understanding. I'll raise a toast to you! Gó niére án bothar leát! (May the road rise to meet you!)

- Sean Fitz

Progress

Today Brian had his first round of real physical therapy! His first session was at 8:30 am and consisted of the standing machine, the Magic Thinking Cap, and the Robot Arm. 

He had already done the standing machine a few days ago; though this morning his leg was a little painful. His splint wasn't properly seated on his foot and it hurt a bit. We cut that one a little short and moved onto the Magic Thinking Cap. It consists of several electrodes on a skullcap sort of affair. Each electrode vibrates or sends a low electrical charge into his head in a pattern. Brian really like it; he said "It's very relaxing." I though the headtricity was quite appropriate given the resemblance of the standing machine earlier rising up like Dr. Frankenstein's table standing up his monster. (It's alive!!) After that, he moved on to the Robot Arm. It's a sort of splint thing attached to a machine that moves his left arm to stretch it and tone the muscles. He did well with that also. That did it for the morning session.

He had brief stroll (roll!) around the garden and a brief nap. Then in the afternoon session at 2 pm he went back to therapy. The afternoon session consisted of the Terminator Arm, a series of electrodes that stimulate the nerves in his left arm with electricity. Then it was back on the standing machine. He did much better with the standing machine in the afternoon; Sean and Brian worked to stretch his left leg and foot out to get it in more normal position so the splint would fit. Later Sean & Brian went for another little roll-stroll in the gardens and tried to see what effect the therapy had. 

The day before, Sean had tried to raise Brian's left arm above his head. About halfway vertical, Brian started comlaining of pain. Today, after the second therapy session, not only could Brian have his arm raised all the way up without pain, but his left arm as MUCH more limber and pliable! He could actually feel the difference, and later said he felt as if he had gotten more benefit in one day than he's felt in two years! Both Sean and Brian had a very good day today.

Meanwhile, Shane and Grainne finally made it into Beijing City for some shopping. They got some great prizes as souvenirs, including some beautiful silk kimono-style robes for Sean, Brian, and Grainne's roommate Mike. And a wireless iPad keyboard so Sean can post these updates on Grainne's iPad. During the thunderstorms the other day, it seems Sean's laptop got hit by lightning and is now slowly dying, piece by piece. At least Grainne & Shane were able to have a decent meal and wine in town too - a welcome change!

Sadly, when Grainne got home she received an email that her roommate (and good friend) Mike's beloved Aunt Tracey died today. Aunt Tracey had written a series of short stories that Grainne has been reading to Brian. Every story had us laughing, crying and wanting to hug Tracey simultaneously. We're very sorry to hear of her death, and we're keeping Mike and his family in our thoughts and prayers. We're sorry and so sad for you Mike. I'm sorry we're so far away.

So, tomorrow Brian had another to sessions of physical therapy. The next day, Brian's other brother and sister, Jonathan and Nevis arrive! We're all looking forward to seeing them, and to the proper coffee, crisps, tea and goodies they're bringing from Ireland! Can't wait!

Tune in later for more pictres and updates!

Terminator arm

Electrical neuro-stimulation. Brian's arm was noticeably more limber after this!

Romancing the robot

Arm moving machine.

Now THAT'S a thinking cap!

"Wave therapy." Brian says is sort of vibrates in patterns.

It's alive!

Standing machine. Reminiscent of Dr. Frankenstein's monster-raising table!

Monday, July 23, 2012

Stem Cells!

Today Brian got his first dose of stem cells via IV injection! He did just fine with it, no adverse reactions. He's a bit hard to get an IV on; the nurse had to stick him twice. Friday is his next stem cell injection, via lumbar puncture and IV.

Grainne & Sean managed to find an ATM to get some cash (nobody in China takes plastic and ATMs aren't all that common). Near the ATM was a street market selling all sorts of cool stuff. Some pictures are posted below. Grainne got splashed with fish jumping out of the tubs twice! She was not happy about that. We got some terrific-looking tomatoes, peppers, onions and cilantro to make some delicious salsa, which we had with some scrambled eggs and a loaf of bread (no chips!). 

Other than that, not too much to report for today. Tomorrow Brian has two physical therapy sessions at 8 am and 2:30 pm. Grainne and Shane are heading into Beijing with Juan, so Sean will be minding Brian most of the day. 

More to come later!

Afternoon at a street market!

We have a jumper!

Afternoon at a street market!

Eels!

Afternoon at a street market!

All we need are some booth babes we can call them the spice girls!

Afternoon at a street market!

HUMONGOUS clams!

Afternoon at a street market!

Spices galore.

Afternoon at a street market!

Live turtles.

Afternoon at a street market!

Green eggs from "Green Eggs and Ham"? They got it!

Afternoon at a street market!

Veggie street market. Mmmm.

Sunday, July 22, 2012

Stem cells - we're goin' in!

Stem cells!

Chinese cicada

Looks the same as at home'

A day out...

Yesterday there were terrible rains her in Beijing. Roads were flooded and at least ten people died, including a policeman who was trying to rescue people out of flooded cars when a charged electrical line fell near him. The flooding persisted till today. The three families who went into Beijing CIty yesterday got stranded by by the impassable roads and had to get a hotel. On the bright side, they said it was very comfortable hotel for only a few dollars more than we've been paying, and it includes a meal! So we checked out of the Yanda Guobin Hotel and will get a room at the other one tomorrow. Tonight, though, the hospital gave us an unused room to stay in. That was very nice.

Also during the rains, we discovered that Brian's room leaks. Badly. In the middle of the night we found ourselves squeegeeing water off the floor near where the windows leaked in the rain. Today we moved Brian to a another room. Slightly smaller, but better lit and more comfortable. 

Since the roads were still largely impassable today, we didn't go to Beijing, but we did get Brian out to a local shopping area for some supper. It was very crowded and noisy, but Brian did very well in the tumult. The food was pretty good at the restaurant. Some of the things were unidentifiable, like the dessert that seemed to be a gelatinous tube with some sort of brown filling. Sean tried it; it was nearly tasteless.

Tomorrow is Brian's first stem cell injection! It will be an IV injection. Four days later, he'll get another IV injection and lumbar injection. Four days later, again another IV & lumbar injection. And another four days later, one more IV injection. On the days when Brian's not getting stem cells, He'll be going to rehabilitation services twice a day at 8:30 am and at 2:00 pm for at least an hour each time. Sounds busy! It will be. He's looking forward to it, but still nervous. Brian and Grainne were able to call their dad via Skype before Brian's bedtime and he said a little prayer with them over the call. 

That was most of our Sunday. Oh, except that poor little Gaby from Columbia fell out of her bed and got a big lump on the side of her head. Her parents weren't going to take her to the emergency room, but the rest of us talked them into it. After all, Brian's brain injury was the result of a seemingly minor trauma. No point in taking chances when you've come this far. Grainne is accompanying Gaby, Juan and Carolina to the ER, which is only a two-minute walk away. Hope all goes well and it's just a minor bump!

Remember, you can email us for anything -  ask questions, say hi to Brian, or just keep us in touch with what's going on back home. Grainne's email is lovenola@gmail.com, Shane's is shanehogan40@hotmail.com, and Sean's is sfitzmorris@gmail.com. We'd all love to hear from you!

Stay tuned!

Dessert

No clue what it's supposed to be.

Street scene.

Because the streetcorner is the best place to knit.

Koi

Big ones are about 3 feet long!

Shane & Brian

Saturday, July 21, 2012

Bowing class?

Floods after monsoons last night.

The underpass near us is still flooded after torrential rains yesterday. 10 people died in the floods, including a police officer trying to rescue people from flooded cars. An electrical line fell & electrocuted him.
Earlier someone had set up a little boat here and was ferrying people across for 10 RMB (about $1.50)

Finally! The sky!

First time we've seen a blue sky rather than gray smog.

Big fuss.

Two Chinese girls saw this snail on the sidewalk and stopped in their tracks, making excited, squealing conversation over it. They even pulled out their camera phones to take pictures. One picked it up and I thought she would pop it into her mouth for a snack, but she just moved it to the side of the sidewalk.
Since they made such a big fuss over it, I figured I would too. When in Rome...

Friday, July 20, 2012

Zara, Firhaf & Anita's daughter (from USA)

Sean takes a shot for Team Ireland

Left to right: Sean; Baruch (from Iraq), Firhaf (from USA) and Claudio (from Argentina).

Gaby having a blast with new Auntie Grainne!

Grainne & Gaby (from Colombia)

Brian in his standing machine.

Back on track

So yesterday the visit from immigration finished at about 3 pm. I guess everything was okay, seeing as we haven't been deported (yet). Afterwards, Michele said that we could go to physical therapy after all, and Brian spent about an hour in a standing machine designed to get his posture in a better position, since he sits in a wheelchair most fo the day. The next session will include more therapies, since yesterday's had to be abbreviated due to the time. 

Also yesterday, one of the doctors discussed Brian's lab results. His liver enzymes came back elevated. Sean researched his medications for side effects, and liver stress was a possible adverse reaction in four of his meds. He had also had a beer the night before his tests, so that probably didn't help either. They scheduled an ultrasound of his abdomen just to make sure there wasn't anything weird going on, like a tumor or something. He had the ultrasound today. Shane accompanied him and reported back that the ultrasound came back normal. Just to be sure, no more alcohol for Brian for the rest of the trip. Which means more for the rest of us. By the way, we've gone through all the duty-free vodka we brought, so it's off to the store! We were also happy to learn from the ultrasound that Brian wasn't pregnant!

The rest of the families here went into Beijing for the day, so we're on our own for the rest of the day. We're all planning on a trip into Beijing again tomorrow, Sunday. That should be a great outing for Brian. Sirach, who is from Iraq and here with his quadriplegic son Sirhan, said "you can't keep him in a room all day, never experiencing anything new. They may as well be in jail. The mind dies. He needs to get out and experience life!" We found that very wise advice, so we're going to take Brian with us into bustling Beijing, though it may be a bit overwhelming for him at first. 

Last night all the families here went to the "Social Room" for a little recreation. We played pool, air hockey & ping pong on the tables there and had a great time socializing. Team Iraq beat Team Ireland in pool only because both Shane and Sean scratched the cue on the last shot. Team Ireland would have won. So much for our mini-Olympics.

So far, no one's gotten sick. You know how when you're in a new country and someone always succumbs to Montezuma's Revenge or Delhi Belly or Peruvian Mudslide? Fortunately we've avoided the equivalent, which we'll call Chinese Dump-lings. We haven't been very adventurous in our food choices yet. Local eggs and "elaborate bacon" is about the extent of our culinary adventures. By the way, the ramen noodles here are really good. Shane & Sean are going back to Lotte Mart today for provisions. We'll see what gets brought back.

Tomorrow, Beijing City! Thanks for reading and stay tuned!


Thursday, July 19, 2012

Explosions and immigration.

Today (Friday) Brian was up bright and early, bathed and just about ready when the doctor showed up with his troupe of nurses. We're trying to get him ready before they come by. Almost made it today. Brian is scheduled to get his first stem cell injection on Monday. Yesterday we had asked about getting some physical therapy for Brian, just to make sure he doesn't lose any of the mobility he has regained over the last three years. They said they would arrange physical therapy for him today. This morning, after the doctor's visit, Michele asked if we were ready to go to physical therapy, but then a few minutes later, she came back to inform us that all the patients' treatments had been cancelled today. "Immigration is coming" she said, and we are not allowed to leave the building. In fact, we have to stay on the same floor of the building. She also took our passports for immigration to inspect. 

So today is a day of rest for Brian and all the other patients here. Not much going on. We're not sure what is involved with a visit from Immigration, but evidently it's a big deal. Perhaps it has something to do with the periodic explosions we've been hearing all morning. For about 3 hours today, every few minutes would be a series of explosions from very nearby. One of the other patients' families assured us it was fireworks or the nearby bullet train passing. Since nothing has apparently been destroyed, we're going with that. Although why there would be fireworks at 11 am escapes us. I'll attach a recording I made of the explosion sounds; hopefully it will get posted on the website.

Brian is in a great mood today. He's a bit nervous about "the unknown," but who isn't? None of us really know what to expect in the days ahead. But Brian benefited greatly from talking to Juan, who is from Colombia. His daughter Gaby is here for stem cells for cerebral palsy which was acquired from a heart attack she sustained at only one week old. Juan encouraged Brian to have "patience and faith." He related the story of Carlos from Spain who left just before we got here. Carlos had his second stem cell treatment here for a massive brain injury that left him utterly paralyzed and non-communicative. Now he can move, stand with assistance, and communicate by pointing out letters on a board to make words!

Ignacio is another patient here from Argentina. He's about 3 and has a left-sided weakness from a brain injury also. His left arm was contracted and pulled tight against his body. After only his fourth stem cell injection, he can move his arm and lift & stretch it on command. Brian was greatly relieved to hear about the positive results that others have seen with the treatments, and is looking forward to Monday. 

We're planning another run to the supermarket later on. No doubt it will provide us with some interesting photo opportunities!
More to come!

Would you care to elaborate?

Big pizza. No so much.

What kind of bird is this for?

View from the hotel

Wednesday, July 18, 2012

Finally made it to Beijing!


Well, we finally made it to China! Interesting place! Susana, the patient liaison from Beike who met us at the airport, is usually the liaison for Spanish speaking clients. She was having a little trouble with English, so Sean was able to converse with her in Spanish. To land in China and have a conversation in Spanish twenty minutes later was... disorienting (get it? Dis-ORIENTing? Hahaha - oh, I crack myself up). We drove to the hospital where Brian is staying (about a 40 minute ride). Chinese traffic is completely insane. The traffic lines painted on the road are clearly what they do with extra paint, since the lines clearly have no function. You just drive wherever there's an opening. Whoever honks their horn the most wins.

The hospital is very different than what you might expect in a western country. There are about ten buildings in the medical complex; each has a different function. There's no dietary services, so if Brian wants to eat, Shane, Sean & Grainne must get it for him. So our patient liaison, Michelle, took Grainne & Sean to the Chinese version of WalMart, called Lotte Mart. That was an experience! Michelle glanced over at a package of some sort of meat Sean was inspecting and exclaimed with delight "Oooh! Donkey meat!" 
Um... ooookaaayyyy. Another package of food that seemed like it would be okay turned out to be "sour cabbage flavor ramen noodles." So we picked up some cereal, veggies, yogurt, sodas, eggs, bread, tea & beer. We'll all probably be a good bit skinnier when we get home.

In Brian's building, we've met several other families from all over the world who are also seeking stem cell treatment. We've met three families, one from the USA, one  from Colombia and one from Iraq. Everyone is very friendly and supportive of one another. One couple asked us out to a restaurant with them the first day, but we were still a bit discombobulated from our journey, so we just took it easy the first day. Two doctors came to evaluate Brian also, and explained that they would be ordering some routine tests for the next day.

This morning, right on the dot of 8 am, the doctor was back with the entire nursing staff. It was quite impressive. Every nurse that would be on duty was briefed on Brian's condition, symptoms and the plan of treatment. They gave us an opportunity to ask questions also. The doctor seems very positive that stem cells will help Brian's muscle tone and movement on his left side. They also are hopeful that his vision will improve, but they said that visual improvement would likely be slower than his motor and muscle results. Ten minutes later (and when they say "ten minutes" they mean ten minutes!) two nurses and one of the liaisons was back to accompany Brian for his tests. Sean also went with Brian. The tests were in another building, the one that looks like a Western hospital. The walls and floor were literally sparkling. It was huge, and very efficient. First stop was phlebotomy, where they drew some blood for lab tests. Then on to the EKG office for that (sinus bradycardia, if you're interested), then to see an ophthamologist. The ophthamologist was an elderly Chinese woman. Though we couldn't understand her Mandarin, she exuded an impressive pride in her work and instilled confidence. After her exam, we were off to get a chest x-ray. The radiology tech was very particular about positioning Brian properly for the x-ray. 

After the tests were done, Brian & Sean took a stroll around the grounds of the complex. There's a huge man-made river or pond, maybe almost a mile long with fountains and gardened islands. The river is filled with beautiful koi; some appear to be nearly two feet long. There are several decorative pavilions among the gardens lining the river, lovely places to relax and enjoy the sound of the fountains. Cicadas are in season here, much as they are in New Orleans, and the constant drone of their buzzing is a comforting reminder of home. Near Brian's building is what we're calling "Church Alley," a small road with a mosque, a synagogue, a Christian church, an Orthodox church and a Buddhist temple. The temple was open when we passed by, and here are some pictures of it, along with a few pics we've taken so far. The sound of Oriental meditational music and the smell of incense was intoxicating. Definitely something to see again.

So far, so good. No tragedies or problems with travel (by the way, Lufthansa is outstanding in the service they gave to Brian!). China is a fascinating place, and huge! You could literally land a plane in the parking lot. Folks that say everything's bigger in Texas have obviously not been to China. There's over a billion people here but everything is so spread out and big that it seems empty. Except the Chinese WalMart, there were loads of people there.

By the way, another China-sized THANK YOU to Brian's latest donors!

Eve N. (Limerick, Ireland) - $15.00
Anne D. (New Jersey, USA) - $250.00
Laura R. (Louisiana, USA) - $50.00

By the way, Blogger, Facebook & Twitter are prohibited in China. This update is being emailed to the website, so I hope it gets posted. Feel free to contact any of us via email! We'd love to hear about the goings-on back home! Stay tuned for more! Here's some pics!