Thomas and I moved into week #2 with an actual move; from the 9th floor to the 8th. Patients receiving stem cell therapy occupy rooms on both - the 9th being the quieter, less occupied floor (great for noise control), but also reserved primarily for non-english speaking patients (i.e. there are 3 Romanians/1 Chinese family staying there now) so Thomas and felt a bit misplaced. Besides, if our foreign environment could be reduced at all, then we had to take advantage... Now we can access the therapy rooms without having to ride the elevator and our new room sits outside the computer area, which I can use in the a.m./p.m. while Thomas sleeps within earshot. We also moved into the 21st century, signing up for "SKYPE", an internet phone service that allows you to make international calls through your computer for just over 2 cents a minute!
There were some other coming/goings as well... a couple from Boston left on Friday and a new mom (Chris) from Michigan arrived with her 5 yr. old daughter Brooke, who also has CP. Chris' mother accompanied them as well. I am still the only Canadian here and the only parent who travelled solo with their child. There are a total of 5 children and 8 adults from the following countries: Australia, New Zealand, South America, Northern Ireland, China with the remainder (about 6) from the US. Romania places 2nd for population (don't know why, but I am told that at one point there were over 10 families staying here at once)...
It was definitely the right choice moving down - although I did hesitate, thinking it might be too noisy and smokey - even tho one of the Romanian women on the 9th smoked in the kitchen while she cooked, the air was overall cleaner upstairs. I am now enjoying more opportunities to socialize and am most friendly with the couple from Colorado (yes, my fellow coffee fein and owners of the power converter) who are here with their 4 yr. old son Justin (ironically 3 of 5 kids are 4 yr. old boys). Sadly, Justin has Battens disease, a terminal neurological condition. He is showing visible signs of deterioration to his balance and his behaviour is challenged, he also has frequent seizures. His parent are hopeful that the stem cells will slow down the spread. This past summer, he was running around and kicking a soccer ball, now his parents cannot be 3 feet away from him in case he has a spasm and falls down. I can't imagine watching your child deteriorate and ultimately get closer to death, they (Cory and Cheri) seem to be holding it together really well, and show unbelievable patience throughout their son's frequent screaming episodes. The other 4yr. boy is Keanu from South Africa, his mother Lisa actually introduced herself to me in an email before either one of us arrived. His is another devastating story - he suffered severe brain damage from a car crash when he was only 3 months old (a driver hit them from behind at high speed). He is physically and mentally challenged and has no vision. The doctors here told Lisa shortly after her arrival that there may be too much damage to benefit from the procedure and I can tell that she is running out of hope and very much depressed. I don't know how one would ever recover from that. Her marriage ended a year after the accident and she is here with her boyfriend who is so hands-on that you'd never guess that he was not the biological father. What a blessing for her and Keanu.
Thomas is progressing well, he is adjusting more to his environment and mentions home less and less. When I showed him his new room and asked him what he thought, he replied "Cool!" he is settled enough to play on his own and allows me to leave the room to prepare meals, although still requesting to "go wif me - in soller". He is constantly greeted by everyone and delights staff with his acquisition of "NIHAO", which is hello in chinese. Tom, his therapist, allows me to leave the room during his physio/standing to give me time to shower and tidy up the room in the a.m. (I seem to be the only parent allowed that privilege), and when I complained to him of a sore lower back, he quickly offered to treat me with traditional chinese massage and electric wave therapy, which I continue to receive.
Thomas and I are slowly venturing out on our own, difficult to do too much with daily morning/afternoon therapy and when he receives his stem cell therapy, he must stay indoors for 48 hours following procedure. This week we have more free time, so activities are being planned within the group. We haven't found too much within immediate walking distance during days we just want to get some fresh air, although we did stumble on a bit of a sanctuary - a Music Pavilion with well kept grounds that's piped in with chinese music. A very nice distraction from the hospital and the surrounding traffic, it has a peaceful and relaxing atmosphere.
Grocery outings are also necessary to do every few days since we have limited capacity in the bar fridge kept in our room, Thomas also loves going "shopping" and riding the taxi car. The driving here continues to amaze me and I try very hard not to pay attention to it. It seems as tho the primary driving rule is whoever beeps first has the right away, regardless of traffic lights, lanes and look out if you're a pedestrian trying to cross the road. This past week I looked out the window and witnessed a man riding a motorcycle with a toddler sitting in front holding onto the handlebars! We have made 2 trips on our own without a translator and I've had to be relentless in hunting down items on my list and then taking chances on a few risky products here and there. I was also successful in acquiring my next essential commodity - red wine! People had already tipped me off that China was not known for its wine, so I scouted for an import and found some nice Australian shiraz, cab/shiraz. I celebrated our 1st week by popping one open and hosting my first cocktail hour with Cory/Cheri and Justin. I knew the couple of glasses we shared had gone to my head when I opened the door to my room and got a whiff of the cigarette smoke and breathed "ahhh" instead of "uugh!". During one of my shopping trips I was also greeted by an american woman who had been living in various parts of Asia for about 20 years (her husband designs golf courses) she helped me with my bags and gave me her tel # and invited Thomas and I out for a day, which I hope to take advantage of before we leave...
On Saturday, Lisa, one of the physicians on staff stopped by to let me know that she had reviewed Thomas' MRI and she and another physician observed Thomas' brain damage to be mild. She wondered if I would be interested in having a 2nd MRI done here in Qingdao, which I agreed to (another good sign I think of their professional standards). We also chatted about any observations of Thomas' reaction to stem cells. I could certainly comment on his accelerated speech, yet I couldn't help wonder if being in a community with lots interaction had something to do with that, or was it simply the stem cells...? I was told that speech is often a telltale early sign. I did not however notice any gross motor advances and I actually thought his tone/balance might be getting worse - a trend I had observed even before we arrived. Because Thomas needs constant and consistent physical input - i.e. if he doesn't keep the beat, then he sets back very quickly and over the summer, he gradually set back. I wondered too if the chinese therapy was not aggressive enough, just more or less toning? At any rate, it was still early days to fully or even partially assess the treatment, I knew that Thomas would definitely need more physio in his day, here and at home and I would have to ensure that this was put in place, particularly if we wanted to maximize the success of his treatment and ultimately give him more physical function. We also chatted about the composition of Thomas' stem cell dosage, and I wondered if everyone received a standard mix or if they tailored it to the specific needs of the patient - a bit of a tricky conversation to engage in (given the language barrier), and I understood that the latter would be developed further into Thomas' treatment.
Sunday was our BIG day, Thomas received his first SCT by spinal procedure and for a parent, a huge nail biting experience. Thomas was wheeled down to neurosurgery on the 4th floor at 3:00 p.m. and almost immediately received his general anaesthetic after which time we parted ways and I had to wait for which seemed forever. Thirty minutes later he came to and I greeted a very much with it child. He said "MOMMY" right away then became excited to see Lucy our interpreter and wanted to give her a hug, but had to refrain because it was critical to remain flat for 6 hours. I don't know how we survived that span of time, but thankfully my child, who can be extremely uncooperative at times, cooperated well beyond my expectations. It was not easy by any stretch, but it wasn't completely unbearable either. The biggest problem was keeping a clip on his finger for the 1st 2 hours - it measured his pulse/oxygen level, and I knew immediately that he would not tolerate it. The nurses had to tape it down and even then I put a sock over it with an elastic and he still continued to rip it off. Once it was removed, he was able to use his right hand and read books, play with my cell phone etc. Mostly he watched Barney over and over, which really saved the day! It was almost impossible to keep his head down and he lifted it from time to time. He was also starving, not having eaten for the past 12 hours and the pizza which I specifically requested arrive after 7p.m. arrived at 5:30 (usual miscommunication) and the aroma in the room did nothing to suppress his appetite. When he did finally eat at 7:45, he was so relieved and so was I - we hit the min. 4 hour mark and from there we worked thru the bedtime routine. I gave him a sponge bath, brushed his teeth and then turned out the lights by 8:30. All in all, we managed the first procedure well and I was extremely proud of my son!
The following 2 days, were not so easy for him. He initially woke up early (before me even), and I was excited to see how energized he was feeling. However, I quickly observed the pain he was feeling in his back, he would tighten up in a sitting position and wince during different transitions. He was very thirsty and kept requesting lots of fluids and I then noticed frequent spit ups, which did not last - just the first morning. I started him on Advil right away and tried to create as little discomfort as possible, choosing not to use his potty and keeping him in bed a lot. Back pain and nausea are both common side effects of the procedure, Thomas never had a fever, which is a good sign that his immune system was not rejecting the stem cells. I hesitated to bring him to his physio appt. yet Tom didn't discourage it and Thomas still managed to participate well. He took good long naps both days. His appetite was better on Monday than on Tuesday when he woke up very lethargic and refused his breakfast and stayed in bed most of the morning. I was getting worried, his back pain continued and he was very irritable but happy to lie down and watch Barney.
By Wednesday things seemed to subside, he still woke with pain in his back, he ate some breakfast (not tons) but by lunch he had completed a good physio session with Tom, was in good spirits and had a generous appetite for lunch. I tried to give him a nap, but he was not tired. He was good for the rest of the day, but weary and a bit clumsy by dinner. He did not show any more signs of being in pain and at his request, I even threw him on the bed a bit which he thoroughly enjoyed. I prepared one of his favourites for dinner - ribs, which he could not eat enough of. He was finally all-right...
Overall we are having a good 2nd week, always a little bit more manageable as time goes on and Thomas is getting through his treatment one day at at time. The days are busy with frequent activities and different people knocking on your door it seems every 30 minutes for this and that. The Chinese food delivery guy comes the following day to pick up his plastic containers, of course nobody tipped me off about this so initially I frantically tried to fetch one out of the garbage for him. We are using the laundry service every couple of days (which is great not to have to worry about) and so far only once did I end up with something that didn't belong to me. I am becoming more familiar with the take-out menu and have been able to make specifications to some of my orders(!) I ended up coming down with a cold this week and lived on a spicy tofu/vegetable soup for several days, it ended up being quite medicinal. One garlic/vegetable chinese dish another mom ordered after hearing me rave about it ended up containing some small caterpillars in it (I guess they didn't clean the greens so well that day), so I now end up watching each bite I take. That same mom - Chris, who just arrived, went to the open market the following day and came back with photos of smoked pit bull dogs on display. She is going thru some serious culture shock! There were some other more significant mishaps that took place this week... Thomas experienced a minor injury in the shower- the drain in our new room turned out to be upside down and he caught his toe on its rough serface and cut a good slice of skin off. It wasn't until I removed him from the shower and noticed blood on my clothes and all over the floor that I became aware - a very good thing we were in a hospital. The gauze tho made it difficult tho for him to crawl around and he continued to scream each time they came to clean it. We also had some issues with our banking, one ATM machine did not return a withdrawal, it was later put out of service. The other machine did not return my card, and of course trying to resolve things like this in a foreign country has added complications, but not completely unmanageable.
During this week, Thomas is scheduled for another spinal stem cell treatment on Friday - just in time to allow a full recovery from the last one. We have the weekend off without therapy so we can either spend the time recovering or if things go better, venture out and do a bit of sightseeing. The stem cell therapy, I am now very aware, is an extremely invasive and taxing procedure and I am thinking that 6 treatments is quite sufficient - some kids undergoing more. I continue to pray each day and bless Thomas with holy water my friend Crena gifted us with before we left (Thomas likes receiving the cross I place on his forehead). I am trying to equip him with the best possible scenario, hoping one day that his life will be made easier for him and this short term pain will pay off. We will continue our journey, heading into the halfway mark and I want to thank the many family and friends for sending us their love, encouragement and support and for keeping Thomas in your thoughts and prayers...
