Third Injection & Grand Place

Things in Thailand are going well, we've settled into a comfortable routine. Our days are filled with Jerry's therapies and our evenings are relaxing watching shows that Jerry has downloaded to his computer, right now it's Falling Skies.

Jerry had his third stem cell injection on Friday, he was a little resistant because it was scheduled to be an IV stem cell injection and he didn't feel anything with his first IV injection. Jerry felt warmth all over his body with the lumbar puncture stem cell injection so he requested the remaining injections all be lumbar injections. I asked that the injection be inserted directly at the sight of injury at the neck, the doctor explained the cells don't work that way. Injecting cells directly at the damaged part of the spinal cord does not ensure that the cells will attach there to repair the damage. I'm not the best at re-conveying technical information but my interpretation of what the doctor said is the body knows where the cells need to be sent to repair damage so the body will draw the cells to the area it's needed regardless of where they are injected. Just like when you cut your finger the body sends cells to repair the damage, it works the same with stem cells the body sends the cells where they are most needed. That's why it's so important to stay healthy and injury free in the first year so the cells will hopefully migrate to the damaged spinal cord as opposed to a cut finger or an infection. The doctor feels that by injecting into the spinal fluid and injecting into the blood stream you are covering all the bases so it's important to do both. After reluctantly agreeing Jerry received the IV and was pleasantly surprised when his body experienced tingling during the injection and for a little more than 24 hours after.  He said it felt like his whole body was tingling. This is very encouraging, like I said before it takes months for the cells to repair damage so there should be no expectation for immediate results but when he immediately feels sensations he has not had before it gives you hope for the future damage repair. Jerry has one more IV injection and four more lumbar injections, I pray he continues to have these encouraging signs that let us know things are happening for the good.

Sunday was our big adventure out into the city, the hospital van took us to the Grand Place & Temple and dropped us off. The distance is not far from the hospital but traffic is insane here so it took us a little over an hour to get to the palace. The ride was a little uncomfortable for Jerry, a lot of the roads are in bad disrepair so it was a very bumpy ride, the driver didn't seem to take into account the wheelchair was bouncing to the point Jerry's head would hit the ceiling he still was flying over the bumps in the road. The driver didn't understand english so Jerry just took it like a trooper and was just excited to be on an outing. We were very glad to see that the sidewalks were accessible for the wheelchair and for the most part they were in good shape, we were off to a good start. Once inside the palace gates we realized it was gonna be an uncomfortable bumpy day for Jerry, the palace and temple grounds were cobble stone. I'm thankful we had an opportunity to go, the palace and temple were very beautiful and a sight to behold but it wasn't very enjoyable for Jerry, we tried to take it slow over the bumpy road but it didn't help much. I have to say I'm so disappointed that one of the greatest points of interest in Thailand the Grand Place & Temple is not handicap friendly. There were only two buildings that allowed entry however not for Jerry because there were stairs and no ramps. The temple was stunning but again Jerry could not go inside because there was no wheelchair access. I left Jerry at the bottom of the stairs for 5 minutes so I could go inside to take pictures at least he could see it in the pics, I got a few pics of the outside and the camera died....go figure, I had charging issues again I'll mention later. We had only been at the palace about an hour and half before Jerry decided we should call the driver to come get us since it will take him an hour to get back. We decided to get off the bumpy cobblestone and cross the street and look for something to eat. We never found a place to eat so decided to be adventurous and eat fried pork on a stick from the street vendor, I figured deep frying has gotta kill anything that could make us sick. It was pretty tasty and we were safe, neither of us got sick. We had a good time walking the street shopping the street vendors, I could do that all day. It took the driver 3 hours to come back to get us, the weather was so hot, Jerry began to get a fever, his body absorbs heat but cannot release it because he doesn't sweat much. Thankfully the vendors did have cold water on ice, we went through several bottles but Jerry's temperature still spiked at 103.4 by the time the driver arrived. Once in the air conditioned van Jerry's temp began to come down and within 3 hours his temp was back to normal. I know it kind of sounds like the outing was a bit of a disaster, but I feel like it was more of an adventure, it was better than sitting in our room all day and honestly Jerry made the best of it, he was very irritable in the first 45 minutes but he decided to make the best of it and that's exactly what he did.

 

I mentioned a charging issue above, resolving it turned into another adventure. Jerry's wheelchair holds a charge for about 2 weeks, it's not been charged since our arrival but was beginning to get low. The wheelchair charger is not like the laptops, it cannot be plugged into the wall. I have the adapter that was on loan from the hospital, which worked fine for charging my camera/phone. I plugged the wheelchair into it on Saturday evening but it only handles up to 80 watts, I don't know how many watts the wheelchair is I couldn't find that info on the charger so I just went for it. I should have know it was not going to handle it, the adapter fried. Luckily the wheelchair had enough charge to get through our Sunday outing but I knew it would die within a few days so Monday was priority to go on a hunt for an adapter large enough to handle the wheelchair charger. Unfortunately since I fried the adapter I couldn't charge the camera for our outing but thankfully I got a few pictures before the camera died. Monday after therapies I got Jerry settled in bed with his computer, the cool thing is his skype works here so if he has a problem he could call me. I left Jerry in the care of the nurses and went out on a hunt for an adapter, I took the train to a mall called MBK, I've never seen anything like it. Seven stories of endless vendors, it was so overwhelming, it's vendors flea market style not like your local mall in the states so looking for a booth in this vast see of vendors that would have an adapter was like finding a needle in a haystack, how I managed to find one had to be divine intervention. The largest one I could find handles 200 watts, I'm still not certain it's large enough but it's working for now. I can charge the chair for about 40 minutes before the adapter over heats. Below are some pictures of MBK....

There is soooooo much cool stuff at this mall and really great prices but it is so overwhelming, I just had to look for what I came for and get the the heck out of there, my brain was on overload.

In a previous post I mentioned the construction going on right next to the hospital. There was an 18 story building they are tearing down, it's now 5 stories. It literally is less than 120 feet between the building and hospital. Yesterday the construction crew dropped something off the building and it hit the wall that separates the two buildings which is right next to the swimming pool below my room, it hit so hard it knocked down a barrier and planter box which landed in the pool. Therapies go on in this pool all day, there must be angels protecting because people had just gotten out of the pool when the big planter flew off the wall and into the pool. There was 1 woman in the pool but the planter missed her and she was not injured. The pool went black from the dirt and obviously aquatic therapies have been canceled for a few days. The pool was drained today and they expect to have it back in operation in a few days. The construction has been an on going legal battle with the construction company and hospital, all the patience are asked to file a complaint to add to their case.

Jerry is due for his second lumbar puncture in about an hour :)

Katie

Amazing News

Yesterday morning started with hyperbaric chamber therapy from 9-11am, then Jerry had a 2 hour break, it takes a lot out of him sitting in an upright position with no head support but he is doing fantastic.  I made an interesting observation yesterday regarding the results from the HBOT. Three years ago when Jerry was learning to drive his wheelchair he ran himself into the kitchen table seat bench which left a bright red mark on his shin that never went away. After 3 HBOT treatments the mark is turning color, and looks a little smaller, it's a lighter color pink now. It's interesting to note that a 3 year old bruise is finally healing.

Jerry had physical therapy at 1 then it was back to bed to rest and prepare for his stem cell injection.
The stem cells are flown in from China and arrive the day of injection. On the day of stem cell injection the other therapies are light and Jerry is supposed to rest most of the day. Injections are performed in the evenings between 5 & 7 so the patient can get through therapies and then rest and prepare for injections. Last night Jerry had his first lumbar puncture stem cell injection and the results were amazing.

Stem cells take several months to begin to repair damage in the body so it's not as common to feel an immediate response to the cells but it does happen and it's very encouraging when it does. When Jerry received the IV stem cells he didn't feel any differently. However within minutes of the lumbar puncture stem cell injection Jerry's back began to feel warm at the site of injection. The feeling of warmth slowly began to spread outward, within an hour he felt the warmth down to the palms of his hands and within 3 hours he felt the warmth down to his ankles, this is all new sensation for him.
Jerry has had full feeling in his shoulders, he could only feel firm pressure in the bicep region and had no feeling at all below the elbow. After the stem cell injections Jerry could feel pressure and light touch down to his wrists. This is so encouraging to know that he has sensation immediately after injection and the real magic isn't expected for at least 9 months down the road. Jerry will have 2 more IV injections and 4 more lumbar injections over the next 4 1/2 weeks. I'm so excited for the next round of stem cells.

As if the above wasn't enough, I have more good news, the hospital will transport us on Sundays for site seeing. They originally said yes but then recanted and said no because they need the handicap van to stay at the hospital in case of emergency. I figured out that the reason they said no was because they were expecting to stay with us and be our guide for several hours. I asked if they would just transport and drop us off, we don't need a guide and they agreed they could do this. I'm happy to say that this Sunday we are scheduled to go to the Grand Palace and Temple.  :-D

Oxygen Chamber Therapy

Jerry will be receiving hyperbaric therapy 4 days per week, this is a therapy we had not anticipated but are so excited to have incorporated into his therapy plan. The chamber is brand new to the hospital and Jerry was fortunate enough to be the first patient to use it. I did a little research on the benefits of the chamber and included some info below. The most exciting thing I learned is

when the brain is injured, HBOT may activate stunned parts of the brain to restore function. I pray the therapy will help to reverse the remaining damage to Jerry's brain. What an added blessing to have this opportunity for Jerry.

10 Benefits of Hyperbaric
Oxygen Chamber Therapy

Hyperbaric medicine, also known as hyperbaric oxygen therapy is the medical use of oxygen at a higher than atmospheric pressure. Hyper means increased and baric relates to pressure. Hyperbaric oxygen therapy (HBOT) refers to intermittent treatment of the entire body with 100-percent oxygen at greater than normal atmospheric pressure. The earth's atmosphere normally exerts about 15 pounds per square inch of pressure at sea level. That pressure is defined as one atmosphere absolute (1 ATA). In the ambient atmosphere we normally breathe approximately 20 percent oxygen and 80 percent nitrogen. While undergoing HBOT, pressure is increased up to two times (2 ATA) in 100% oxygen.

This increased pressure, combined with an increase in oxygen to 100 percent, dissolves oxygen in the blood plasma and in all body cells, tissues and fluids at up to 10 times normal concentration—high enough to sustain life with no blood at all (from 20% to 100% oxygen is an increase of 5 times, from 1 ATA to 2 ATA can double this to a 10-fold increase).

Some of the many amazing benefits of Hyperbaric Oxygen Chamber Therapy are that it:

- greatly increases oxygen concentration in all body tissues, even with reduced or blocked blood flow;
- stimulates the growth of new blood vessels to locations with reduced circulation, improving blood flow to areas with arterial blockage;
- causes a rebound arterial dilation, resulting in an increased blood vessel diameter greater than when therapy began, improving blood flow to compromised organs;
- stimulates an adaptive increase in superoxide dismutase (SOD), one of the body's principal, internally produced antioxidants and free radical scavengers; and,
- aids the treatment of infection by enhancing white blood cell action.

The use of increased atmospheric pressure for medical therapy has intrigued many physicians and scientists for hundreds of years. Though not new, HBOT has recently gained importance for treatment of chronic degenerative health problems related to atherosclerosis, stroke, peripheral vascular disease, diabetic ulcers, wound healing, cerebral palsy, brain injury, multiple sclerosis, macular degeneration, and many other disorders. Wherever blood flow and oxygen delivery to vital organs is reduced, function and healing can be aided with HBOT. When the brain is injured by stroke, CP, or trauma, HBOT may activate stunned parts of the brain to restore function.

Results can be dramatic. Patients with cerebral vascular disease commonly recover from complications of stroke more readily after HBOT. This is also true for potentially gangrenous legs and feet caused by blocked circulation, and for slow-healing diabetic ulcers. HBOT relieves pain, helps fight infection, and keeps threatened tissues alive.

One of the world's most experienced authorities on hyperbaric medicine Dr. Edgar End, clinical professor of environmental medicine at the Medical College of Wisconsin had this to say : "I've seen partially paralyzed people half carried into the HBOT chamber, and they walk out after the first treatment. If we got to these people quickly, we could prevent a great deal of damage."

Day of Rest

Today is our first day off with nothing to do, for Jerry it will be a day of rest, for me I will be doing laundry by hand in the sink, that ought to be fun, and going to market. I'm a little sad that we were unable to go out to see some sites today, the hospital won't be available to transport us, they only have 1 van and need it to be kept at the facility in case of emergency. I have 1 other option which is a handicap taxi, Thailand only has one company that I can find, and they had no Taxi available for today. It's odd, they don't have a phone number to call, correspondence is via email, I've requested to reserve the taxi for the next 3 Sundays, I'm waiting to hear back, I hope it works out as it's the last resort. What a shame it would be to visit Thailand and the only thing we see is the hospital.

There's a building right next to the hospital that's being torn down, it's so noisy and the hours they work are insane. They begin work at 8am and work until 11pm, I thought they would at least have Sunday off, but I was mistaken, 7 days a week.....wow. All day it feels like an earthquake, this building shakes from 8am to 11pm, it's crazy. The view from the window right outside our room....

 

The view from our room out toward the street is much better, here are some pics at dusk...

Happy to be in Thailand

It seems as if the forces of nature are somehow trying to prevent me from completing a post, I've been trying to post an update since the day after arrival. The first obstacle to overcome was the power difference between Thailand and US. Then I spent 2 hours 2 days ago writing a post, I saved it to come back to proof read before publishing, when I came back, it was gone. I spent a lot of time yesterday trying to recover the lost data to no avail so started writing a new post. I had to take a break to take Jerry to therapy so I carefully saved it, I came back to find it was gone again, really???? What the monkey??? So here I am again, let's hope third times a charm....this time I am writing in word and will paste and publish at the same time.

The electrical differences proved to be more of a challenge than I anticipated. Thailand electric receptacles are 220 volts as opposed to the US's 110 volts, which requires a converter to avoid damaging equipment. The hospital here does not generally provide a converter however they did have one left from a previous patient they let me barrow. The converter only has one plug so Jerry and I had to keep switching back and forth to power our laptops. The converter kept overheating so I went on a mission to find another. I walked a few blocks to the mall, got lost a few times but finally managed to buy another converter and make my way back to the hospital, only to find the new converter also over heats. After much research I figured out that the laptop drew too much amperage for the small converter however the power supply for the laptop is capable of handling 110 to 240 volts. So after all that hassle  it turns out we can plug our computers directly into the wall....whew obstacle overcome. 

The journey to Thailand was quiet the adventure, we arrived at SFO 3 hours early fully expecting that it would take at least an hour to an hour and a half to get through security. Upon arrival I had assistance curbside to transport all the luggage to baggage check. I had made arrangements with the airline a week prior to departure to have an assistant at every airport to help with whatever I needed from transporting bags, to transferring Jerry onto plane, to disassembling the wheelchair and getting stowed to cargo. SFO fell short and was a bit of a disappointment in the assistance program. They will assist if you rely on them for a wheelchair, if you have your own wheelchair they will not assist you to the gate, go figure. It was a small challenge for me to drive Jerry's wheelchair and manage 3 carry-on's but I managed to still get to the gate an hour early. Getting through security went very smooth, the process was much easier than the last time we flew. Once we got to the gate I had plenty of help to load Jerry onto the plane, disassemble and bag the wheelchair parts.

Jerry was so excited with his seat, first class far surpassed my expectations. Jerry was able to stretch out completely and recline, it was almost as comfortable for him as being at home. I had plenty of space to get in the seat with Jerry periodically to stretch and manipulate his legs. Jerry was like a kid in a candy store having his own TV with hundreds of movies to choose from including new releases. He watched 4 movies and pretty much stayed awake most of the time. 

 Jerry's very own command center

The food on the plane was absolutely fabulous, there was a constant flow of food, snacks and beverages. I think we both may have gained 10 lbs on the flight, lol.....it was to good to resist, I felt as if I were about to bust at the seams at any moment pretty much the entire flight....just because you can doesn't mean you should, lol. Here's just a sampling of the delicious food served in first class....

 h'orderves...sushi

 delicious salad with fresh mozzarella and greek olives

 filet mignon, potatoes, asparagus

 gourmet cheese, grapes, wine and ice cream with caramel sauce

 cheese omelet with ham and saucage

 curried chicken and rice

The transition in Tokyo was so smooth and easy, the staff in Japan were so AMAZING! I had about 8 people helping me with bags, transferring Jerry, getting the wheelchair from cargo, I had 2 people to escort us to the VIP lounge which by the way is pretty cool, free buffet and bar, we were too full to partake, but cool none the less. Two people came to the VIP lounge to escort and help us at the gate, it was so great and stress free, SFO needs to take lessons. We touched down in Thailand about 11pm on July 1st, I felt such a sense of relief, all our efforts paid off, we were finally here. I was so grateful that everything had gone so smoothly. As we prepared to transfer Jerry off the plane the wheelchair was being retrieved from cargo. We were informed the chair was ready we could bring Jerry out, I transferred Jerry into the isle wheelchair and it took 3 of us to roll him off the plane. You have no idea the shock and disbelief I felt when I saw this...

The airline had destroyed Jerry's $35,000 wheelchair, how did this happen? ...how was this even possible? I stood there for what seemed like forever, my mouth open, my hands on my head, I couldn't speak, I just stared at it. There were about 15 cleaning crew waiting for us to get out of the way so they could board and clean the plane, there were about 6 people who brought the chair up from cargo, there were about 10 airline attendants waiting to get off the plane and a supervisor that had been sent to assist me. Everybody was silent, looking at the chair and then looking at me, so many thoughts running through my head in a split second but it felt like slow motion. The feeling of fear was overwhelming wondering how I will manage without a wheelchair. I began to shake as tears welled up and then I lost control and unleashed a fury that I'm not proud of, I'm sure to all the non English speaking staff I looked like a raving lunatic. Nobody offered an explanation, an alternative, a game plan, nothing ...everybody just sat silent and absorbed the tongue lashing. It took a minute for me to come to my senses, calm down and formulate a game plan. I requested an airport wheelchair to transfer Jerry into, I had someone go to baggage claim and get my bags, I sent someone out to look for the hospital van to explain to them what had happened. I requested maintenance to bring tools to try to fix the chair. The wheelchair that Jerry was forced to sit in was not designed for a quadriplegic, no tilt or recline, no head rest, no straps to even hold him up or prevent him from falling out of the chair, he was too tall so his legs would not stay on the foot rests, it was a mess. After 30 minutes of trying to fix Jerry's chair I realized we just need to get Jerry out of the crappy chair he was in, he cannot hold his head up so we had to hold his head for him. It was beginning to cause him a lot of pain so I knew it was time to go, forget the repairs to his chair, just get him to the hospital and worry about the chair later, I had an entourage of people assist me to the van. By the time we reached the hospital and got settled into bed it was 2 am, not sleeping much on the plane we both were exhausted and ready to sleep. We got about 5 hours sleep then it was time to start the day, breakfast then blood work and an assessment by the doctor. Next was an assessment for occupational therapy then lunch, after lunch was a physical therapy assessment. By 3 pm we were done for the day. The hospital maintenance man brought tools and supplies to our room and helped to get Jerry's wheelchair fixed, praise God his wheelchair is now back in operation. 

I needed to go to the mall to get some food supplies for our room so I arranged for the hospital van to take us. The mall is walking distance however the walk is not wheelchair accessible the sidewalks are very bad if any at all  so unfortunately we will not be able to walk the neighborhood to explore. We were given 2 hours to get our shopping done before the van returned to pick us up. We unloaded went through several obstacles just to get into the mall, it sure makes you appreciate the ADA compliancy of the US. Once in the mall Jerry's chair malfunctioned resulting in the joy stick operations program being completely erased, I don't know if this was a result of the trauma the chair experienced at the airport or what, I just knew that now the chair was non-operational and yet again I was faced with a situation. Thank God I thought to bring the programmer to Thailand however it was not going to do me any good at the moment it was back at the hospital. I'm thankful to be blessed with the gift of problem solving, it comes in handy, lol. The only alternative was to push the chair manually which is doable but with Jerry in it, it does weigh almost 550 lbs. I managed but boy was I tired after pushing that chair around for 2 hours. Jerry was not happy with all the obstacles we faced and vowed he will not leave the hospital again, we need to work on his patience and tolerance. The hope that we will be able to do some site-seeing on Sundays is slowly diminishing. The hospital customer coordinator said the train is not accessible in this area because you have to climb several flights of stairs to get to it and there are no elevators. There are no taxi or handicap accessible vehicles to transport Jerry, only the hospital van which is likely not an option, I put in a request we will see what happens. I'm a little sad to think our first time overseas and  we are confined to the hospital. :(

I forgot to mention our room is awesome... big bedroom with two queen beds, nice bathroom with roll-in shower, a living room/ kitchenette. 

Wednesday was Jerry's first day with a full schedule starting with breakfast at 8am. The therapies all last an hour each with the first therapy OT starting at 9, then acupuncture at 10, break for lunch and hyperbaric chamber at 1 ending with PT (physical therapy) at 2:30. The hyperbaric chamber is a new therapy that was just added to the hospital. Jerry was the first patient to use it, so it was a very big deal for everyone here, it was so cute, all the staff were taking pictures and so happy, everybody was getting in the pictures and there was at least 10 camera's, every picture had to be snapped with every camera, lol. I need to do a little research and learn a little more about the benefits of the hyperbaric chamber, I'll let you know when I've learned a little more about it. 

Jerry received his first injection of stem cells at 7 pm Wednesday evening, which were administered by IV. The most common adverse reactions are head ache and fever and luckily Jerry didn't experience either. We waited so long and worked so hard for this moment, I hope and pray it will improve the quality of Jerry's life.

Friday Jerry had aquatic therapy at 9 am, it was nice for him to get in the pool. I need to find out a little more about the pool I think the water is specially treated with minerals or something, the nurse was trying to explain but it was very difficult to understand. Jerry had hyperbaric treatment at 1, PT at 2:00 and acupuncture at 3. Jerry is done for the day and resting in bed, he's pretty exhausted. So far Jerry is very excited about all the treatment he's getting and his hopes and spirits are high. 

All for now

Katie