Jennifer's SCI Blog

Day Twelve

The morning therapy went as scheduled and since we knew what to expect, the anticipation for this treatment was nothing compared to last one.  In fact, I think she was a little surprised when I told her I would just wait for her in our room.  This time, when they rolled her away, bed and all, she was headed for the ninth floor treatment room instead of the 4th floor operating room.  She was back in less than 30 minutes, everything went as planned and she was just very sleepy.  The Valium was winning this time…she came back to the room and slept for 2 of the six hours she needed to remain flat.  She woke up hungry which is always a good sign…and thirsty of course.  Luckily, she was able to drink but she would have to wait another four hours before she could eat.

To help pass the time, it was Friday morning in the US, so it was time to skype with Dad and Chase.  Everything in Centralia seemed to be status quo, Chase was getting ready for school, we checked to make sure Feivel was still alive and Dad was ready to go and get him some breakfast, so we didn’t talk long.

Another day down, and only 28 more to go……her schedule showed free for the weekend so there was no telling what she would talk me into over the next two days.

Day Eleven

Today during her lunch break from 11:30 to 2:30, we decided it was time to check out the mall for real….do a little shopping.  First stop, ATM, second stop the Versachi outlet store.  Wow…right in the front, purses prominently displayed.  The first one she picked up, 28,000 R&B (that’s roughly $4,000 US)…if this is the outlet, I can’t imagine the store.  One thing we noticed right off, besides the grand wide open entrance with a guard at the door, was the 100 salespeople waiting for the chance to help you.  All of them stood at the edge of the linoleum in front of their department, literally at attention….feet together, standing straight, shoulders back and hands behind their backs.  We’ve never seen anything like it.  They had some cute jeans for $2,800 R&B, but they weren’t $400 US cute.  We perused the store, even though we had no intention of purchasing anything, but it was funny to watch them watch the americans with anticipation.

We stayed on the first floor of the mall and I’m happy to report we finally discovered an elevator, right by the carousel and indoor roller coaster….yes an indoor roller coaster, bizarre.  Just when we think we can’t be shocked, we are.  They did have a Nike and Adidas outlet store as well, but everyone here is a size 3 and we were unable to find anything in a “healthy girl” size.  No fear, we’ll keep looking and keep you posted. We had lunch at the local KFC where we made our selection by pointing at items from a picture menu.  The sign may have said KFC, but it’s not the same as in the US.  They did however have fries and ketchup, something we hadn’t seen yet. 

Back to therapy for the afternoon, where Jenny made plans with Woody and his wife Mia for dinner.  A trip to Pizza Hut was scheduled to follow therapy and I had no idea what I was in for.  We left at around 5:00 and finally made it to the Pizza Hut an hour later.  Nothing like trying to guard two wheelchairs from oncoming traffic coming from every direction.  There were alot of intersections to cross and the sun was beginning to set, thankfully we made it safely, even though we were just about taken out by a bus that come up from behind us…..whew, stressful.

I guess it was worth the walk, the pizza tasted like normal US Pizza Hut and it felt great to have a full belly of normal tasting food.  We had fried shrimp and chicken wing appetizers and of course we ordered a pizza to go as well for tomorrow.  I made sure Jenny got her fill, because I had no intention of making that trek again….too far and too dangerous in that traffic.   You know her, no fear.  

Day Ten

We’ve heard tell from patient families that have been longer than us that once you make it past day ten, the days get a little easier.  I don’t know about easier but it certainly gets us closer to going home.  There are many times in a given day that I still can’t believe I’m in China.  I look around and see everything foreign to me, I listen and everything sounds foreign to me, I eat and everything tastes foreign to me and then I look at Jenny….she is so full of hope and belief that she will receive, I realize I’m exactly where I’m supposed to be at this moment in our lives.  She never said it was going to be easy and she certainly didn’t promise this would be a vacation.  Her determination reminds me that the reward is a little sweeter when you have to struggle some to get it.

The day went on as scheduled, therapy after therapy after therapy for her.  One thing is for sure, something is happening with those stem cells.  Now she can not only move her ring finger and her pinky finger, but her middle and first finger on her left hand as well.  The doctors have her doing 200 fist making exercises a day and she can almost touch all four fingers to the palm of her hand.  She definitely is noticing a difference during acupuncture as they increase the number of needles they’re using and the discomfort is increasing as they go in, especially between her fingers.  The sensation of her torso is changing as well.  When they evaluate how the feeling sensation is along her rib cage as compared to when they touch her face, she says it feels different…..the sensation is increasing….and it’s changing the further down her torso they go, as compared to when she first arrived.

She isn’t going to like that I’m sharing all of the details, she’s very modest when it comes to talking about her progress, but that’s my job….to tell the story, good, bad or indifferent.

Day Nine

Tuesday’s have now been designated as “Skype with Dad” day and around here, they’re known as “Laundry Day”.  Around 10am on Tuesday, Thursday and Saturday, the laundry lady comes by to pick up your laundry and drop off the load she picked up on the previous laundry day.  We’re still a little cautious that we’ll receive everything back that they picked up, so we keep a list.  So far, so good.  It’s a luxury anyone could afford at about 10 cents an item, but it’s obvious they do not have access to bounce or downy.  It’s clean and we’re very thankful for that.   

I can not describe how important Skype is to us…I don’t think we could make it through without seeing the faces of the ones we love and left behind.  Whoever came up with that idea is a genius.  Although the time difference is a challenge, we manage our way through although we’re constantly asking each other, ”what day is this”, “what time is it there”…

In addition to the six hours of not being able to lift her head, she had to remain in bed for what they originally said would be 24 hours.  Although her skin was getting additional rest (and healing quite nicely I might add), she is struggling with just laying around and doing nothing.  Despite their constant monitoring of her temperature, blood pressure, asking her if she had a headache, checking her puncture areas, reassessing her overall capabilities, she finally convinced them around 1pm to let her get up.  She went to afternoon therapy as scheduled and was happy to be up and about.

I took that opportunity to finally venture out on my own.  We were running low on R&B’s ( roughly 7 to 1 exchange rate in currency) and since they hadn’t replaced my creamer and sugar, I decided I couldn’t wait any longer.  I went over to Lottemart and used the ATM all by myself.  I picked up some groceries while I was there and finally happened upon some soft white rolls, which we have found is a rarity around here.  All of the bread is hard even from the moment that it is first opened.  I grabbed a few cans of soda for Jenny when I discovered they had what appeared to be Fanta Orange and Sprite.  She certainly appreciated them, although she did mention that they are not near as carbonated as we’re accustomed to.  I was actually able to find coffee mate creamer and a box of sugar cubes, so I was set.   Now all I had to do was carry the the three bags of groceries back…..man you just don’t realize how convenient your car really is until you don’t have it.

Day Eight

First week down and five to go, and today was the big day.  She was scheduled for not only her first Lumbar puncture Stem Cell injection, but her one and only bone marrow aspiration.  Jenny was a little nervous and I was excited.  She was scheduled for the operating room for 3:00, but everything depends on when the flight arrives with the stem cells.  You can always tell when they’re here, everyone starts moving into position for the magnitude of treatment schedules.  There are 12 rooms on the 8th floor and all of them are full.  As soon as one family leaves, another one arrives, wide eyed and full of hope.  We’re beginning to feel like veterans at this point, as we’ve seen 4 or 5 families leave since we arrived.  There are alot of children here being treated for ONH (blindness), CP (Cerebral palsy) and MS (multiple sclerosis).  They are doing amazing things with stem cells in these areas and many of the families are experiencing alot of positive results.  There are two other spinal cord injury families  here that we know of besides Jenny’s.  Woody was injured in an ATV accident and we’ve become well acquainted with him and his wife Mia from Florida. 

Back to Jenny….the morning was therapy as usual, IV port in her foot around noon and no more liquids, and then nothing to do except wait for 3:00.  They allowed her to go to the operating room in her chair, which we thought was odd, but then there are so many “odd” things, we didn’t question it.  When we arrived to the double doors marked “Operating Room”, we barely cleared the threshold when another group of men pushed past us needing immediate attention.  They appeared to be fellow workers surrounding a man in a wheelchair, bare to the waist, with a coat thrown over the front of him.  Of course we couldn’t understand a word, but I couldn’t help but notice that he had some sort of hook impaled into his chest when they pulled the coat away to show the nurses….needless to say, they took him first.

After that bit of excitement, they were ready for Jenny.  They placed her on a gurney that was handy and left the chair with me.  I didn’t need to ask as they rolled her away, the large red mat taped to the floor was a clear indication that was as far as I could go.  They pushed her through two more sets of double doors and she disappeared from my sight.  As I paced and prayed, and paced and prayed, I couldn’t help but ask myself “What are we doing?”.  We’re half way around the world and a team of eight Chinese medical personnel just rolled my sister away and no one with her could speak English.  I kept telling myself that if she needed me, I’m sure I could hear her yell for me….they were only going to give her some Valium in her IV to relax her and a local anesthetic, she could still scream for me if she needed me.

An hour went by and out she came, the doctor kept saying “Good, Good”, she was cold and tired but everything was fine.  She didn’t feel any pain, only a thumping noise and pressure as they aspirated the bone marrow from her hip, but her shoulder hurt from laying so still for so long.  Two nurses assisted us with her still on their gurney back up to our room.  Nervously, I watched as a team of 6 transferred her to her bed holding onto edges of the blanket.  Here comes the the hard part….she had to lay completely flat on her back and could not raise her head for 6 hours and could not have anything to drink for the first 2 hours.  It didn’t take long…once she was wrapped in a blanket and left alone, she was out like a light.

Day Seven

Sunday is meant to be a day of rest, but Jenny had her fill of resting and was ready to enjoy her day off by getting out and about.  I was leary of the two of us venturing out on our own, but Jenny was determined.  I had agreed that we would go to the Lottemart and check out the food court and maybe do some shopping as long as we stayed on the first floor.  As we crossed the street, which is no trivial task, and reached the other side safely, Jenny changed the plan.  She convinced me that we could do it, we could walk the 2 or 3 miles to the Holiday Inn and probably make the lunch buffet.  The thought of a steak and salad  for lunch was enough motivation for me, so off we went.

We followed the same path I had taken the day before, the peaceful winding path through the park, completely accessible….until we came to the crossing at Century Park.  All 4 inch curb and no way down.  We noticed a work truck about half a block down driving up  over the curb to a construction site and figured there was enough of a dirt ramp that we could do a little 4-wheeling….sure enough, success.  We had to backtrack a little, but we were free to cross to the other side, again, carefully crossing 4 lanes of traffic with horns blowing constantly.

There it was, the five-star, 15-story Holiday Inn, it was beautiful.  Up to the second floor (in a normal elevator) and we were seated overlooking the lobby.  We both ordered steak, salad bar and mashed potatoes…its was delicious.  As we leisurely strolled back, we said more than once that it was worth the walk and that we intended for this to be our weekly treat and Sunday ritual.

I’ve attached a few pictures of the park for your enjoyment….

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Day Six

Jenny spent the day in bed as planned, and although she’s perfectly able to turn herself, the nurses were in every two hours on the hour to turn her.  You can imagine her mood by sunset….she had watched all of the  DVD’s she cared to watch and had her fill of PBJ’s.  The day seemed like it would never end.  She encouraged me to go out with one of the other caregivers Barbara and take a walk in the park.  I was extremely reluctant to go anywhere without her, but I finally conceded to the pressure.  Barbara and I walked just past Lottemart where a beautiful and peaceful park is located.  It is designed around cultural arts and had many statues, waterfalls, assorted flowers and chinese design and markings throughout.  It reminded me of a botanical garden.  We walked as far as Century Park, where some of the Olympic games were held, and were gone for about 2 hours.  It was nice just to get outside and breathe some fresh air.

Barbara mentioned that one block left from Century Park there was a Holiday Inn that served a wonderful “american style” breakfast buffet and strongly encouraged that we check it out.  Needless to say, when I returned, Jenny and I made plans to check it out tomorrow.

I did manage to get the pictures downloaded from the camera and uploaded throughout the blog….click on the archives and scroll down to see them.

 

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Day Five

When we were planning our trip, I assumed that three meals a day would arrive in your room, just like in every other hospital…………not the case here.  There is a kitchen that is shared by all families on the floor, and each patient is assigned a cabinet in the kitchen that corresponds to your room number.  They provide 2 hot plates, a griddle and a toaster oven, pots and pans and there are a few utensils.  The counter is lined with several partially used products from prior patients that are considered “community property”.  However, in our cabinet, I had placed the few priceless items that I brought such as Starbucks ground coffee, coffee filters, a box of sugar packets and a container of Coffee Mate creamer.  Obviously, my coffee is important to me and is one of my few comforts from home that I brought along. 

When we returned from Lottemart the previous day, I was very excited to put our new items in our cabinet.  When I got up Friday morning (at 4am), I opened our cabinet and the box of sugar and the container of creamer were gone.  I stood there for about 5 minutes, rubbing my eyes in disbelief.  I couldn’t believe they were gone.  I even went back to the room, told Jenny what had happened and went back into the kitchen to look again…..still gone.  I drank my coffee black that day and immediately moved everything from our cabinet to our room.  When I mentioned the missing items to the translaters, they were extremely apologetic and offered to purchase the replacements. 

Although Jenny’s skin was still an issue, she continued her therapy as scheduled.  We merely transferred her in and out of her chair and on and off the mats instead of her transferring herself.  Although she would rather do it herself, she complied with the requirement so she could receive her treatments.  Everything she has ever been taught is that when you have a skin issue, the best medicine is to get off of it.  They view it differently here and it was suggested by our other family members in the medical field, that we were becoming “problem patients” and should quit resisting and follow their instructions.  Clean and dry and business as usual.  We may not know very much chinese but we’re starting to pick up on tone and when the doctor starts waving his arms in a crossing motion, we knew that meant NO.  They’re trying to deal with two very headstrong independent women and we’re trying to get use to reigning that in.  

This week it worked out where her weekend schedule was free so we planned for her to stay in bed on Saturday and let it continue to heal on it’s own.

Day Four

Before the sun had a chance to rise, she woke me up and wanted to show me what she could do.  She prefaced it with, now it’s not a big thing, but I can move my fingers.  She has always been able to move her hands, but was not able to move her fingers individually.  On her left hand, she could now move her ring finger and her pinky finger a little bit by themselves.  It a small thing for most, but a huge thing to us.  We were very encouraged and she couldn’t wait to show her therapist Tom and her doctor. 

We were still struggling with her skin and had resorted to assisted transfers over the last few days, which you know she doesn’t like having to have assistance with something she can do herself.  We had decided it was best for her to stay in her bed for the morning and have her therapist come to the room for PT.  When the therapist and the doctor came in to see her, they were all smiles and very surprised for such quick results.  We weren’t, we know God is really in charge here.  They commented on her increased strength, as they had assessed it in the days prior, but definitely noticed a difference this morning. 

They transferred her to the standing machine, I held the rings, and she completed her morning routine.  During the lunch break, it was finally our first chance to go to the market.  Since the hospital assigns a translater to go with you the first time, Lucy and Jenny and I took off for LotteMart.  This local market is located inside a 3-story mall right across the street from the hospital.  When we entered the first floor, it was set up just like a clothing department store.  Lucy led the way and when we turned the corner to go up to the second floor where the groceries were, there was no elevator.  Instead, they had what I call a conveyor belt vs. an escalator (no stairs) and I immediately said no.  You know Jenny, “oh come on, we can do it”….three guesses, up we went. 

Since supplies were a necessity and I was ruled out two to one, I gave in, pushed her onto the conveyor belt, and used my leg as a brace against the back of her chair as we rose to the second story at what seemed like a 90 degree angle.  Getting on and off the belt going up was much easier than coming down.  Because of course, she had to see the third story as well.  You need to realize that when you’re going down, we have to enter the belt backwards.  Timing is everything because on the count of three she either has to lock her brakes or release them in a timely manner for this process to work.   As for the grocery selection, oh my….picture labels helped, but the smell of seafood and all meat products exposed and unwrapped was a little overwhelming.   We stuck with the basics, like peanut butter and jelly, eggs, bacon, bread, milk, and even managed to find what resembled a Kit-Kat bar.

We safely rode the belt, crossed the busy road and were thankful for some groceries of our own.  The afternoon went as scheduled and we treated ourselves to PBJ’s.  I would have to say that one of the things we miss the most is familiar textures of food.  The jelly is jelly, but different texture….the bread is bread, but it smells funny and it’s not soft…even the kitkat bar was candy, but the chocolate was different and not as sweet.  Yes, we know, we’re spoiled.

Day Three

Despite my efforts to locate a tube of neosporin by going door to door and applying it heavily, I was scolded by the team of nurses the following morning.  They knew enough english to repeatedly say “Clean and Dry”, “Clean and Dry”…and against our better judgement, insisted she get up and get ready for her big day.  She attended PT and her standing therapy which was followed by putting a port in her foot for her first stem cell treatment to be administered intravenously.  This would be the first of 8 and the only IV injection. 

During the lunch break, I was approached by one of the translaters requesting our passports and told they needed to be taken to the police station….of course, my first reponse was “Why”.  I was informed that we must be registered with the local police and would need to pay a cab driver $14 R&B to take them there on our behalf.  As soon as I realized I had to hand over the passports and they would be leaving my sight, I began to get a little nervous.  When I saw the driver leaving with a stack of about 30 passports in his hand, we prayed for their safe return.

Although her butt was “tingling” and her foot was turning  black and blue from the IV port, we were trying to mentally prepare for the afternoon by reading some scripture when all of sudden, Jenny gasped!!!  As I flew off the bed, all she could say was “Moms rings are gone”.  Now most of you are aware that our mom passed away 8 weeks ago, but you may not know that Jenny and I were given her wedding rings.  Jenny wore the set from her 25th anniversary, I wear the 40th wedding band and our sister Connie has her original engagement ring.  Despite everyone’s opinion that we should put these away safely, we choose to wear them.  Jenny even had hers sized to fit.  Now, something very precious to her was gone. 

For Jenny to be speechless is very uncommon, but she looked at though she had been hit in the head with a baseball bat and literally couldn’t speak.  I began to tear up the room looking for them, going through luggage, laundry, blankets, trash, etc. and trying to think out loud as to the last time we remembered seeing them.  No luck….

About that time, the nurse arrived and it was time to go….”Let’s go, Let’s go, Let’s go”.  Reluctantly, and definately not in the right frame of mind, we headed for the elevator.  As Jenny and the nurse turned left to wait for the elevator, I just happened to feel the tap on my shoulder to look to the right….and there they were, under the standing machine in the PT room, twinkling in the sunlight.  I literally dove across the linoleum floor, headfirst, just as if I was sliding in home base, and grabbed them.  As I sat up, thanked Jesus and Mom, I looked over and Jenny was crying.  Now if any of you know Jenny, this is equally as rare as her being speechless.  I immediately put the rings back on her finger, gave her hug and although the nurse repeated “Let’s go, Let’s go”, we took a moment and thanked god.

Up to the ninth floor, in a tiny room with 4 other patients, she took her spot and began to receive her first treatment.  It only took about 30 minutes and we were back in our room within the hour.  On the days you have stem cell treatments, the remainder of your afternoon schedule is cancelled.  We received our passports back safely, had mom’s rings back on her finger, stem cells on board, and we were done for the day.  I think we ended up going to bed by 6pm, emotionally and physcially exhausted with plans to visit the local market set for tomorrow.