Wednesday, April 29, 2009

The Morning After

Wow, two posts in a 24-hour span. I am on a roll. Plus, Trevor is leaving tomorrow to go back to the States to fly a couple of trips to make some cash to offset a little of the crazy amounts of money we spent to come here, so I don't figure I will have much time up update while I am taking care of Fletcher solo during the sixteen days he will be gone.

Last night was fine. Fletcher fell asleep a little before midnight (not bad since he didn't wake up from his nap until 7:30pm) and slept straight until 8:30 am this morning. Trevor took him over to the therapy room for stander time, while I tried to catch a few more z's, but that didn't work out. Instead I decided to download some pictures (slideshow below). Come to find out that there was some kind of Beike representative touring the floor and she took a picture and did a mini-interview with Trevor and Fletcher, so we'll see if that ends up in a newsletter or something later on. Of course I asked Trevor if he at least took off the dirty bib Fletcher was wearing (we feed him in the stander at times to distract him) and you can guess the answer to that one.

We don't have any more stem cell infusions this week, so our schedule for the next couple of days consists of roughly an hour each of stander, PT, and electric wave therapy per day. Trevor leaves bright and early tomorrow morning (Friday) and we have Saturday and Sunday free. A lot of times groups will hire a driver and go to the zoo, or silk market, or other local attractions on free days, so I will have to check around and see if anythings brewing. I think they will give us our schedule for next week on Sunday, but I am guessing that he will have lumbar infusions on Monday and Friday.

Until then, enjoy this slideshow of the past week in stem-cell land...

The Hardest Part is the Waiting

I will try to do a post sometime about the technicalities of the stem cell treatments, but in the meantime I thought I would do a quick update on how Fletcher is tolerating everything. In a word: spectacularly. I've always known my little guy was pretty special, but he has really been a dream throughout this trip, treatment-wise and otherwise.

Fletcher had his first umbilical cord blood stem cell treatment on Monday. They do the first treatment via IV, so in case something unforeseen happens (allergic reaction and the like) they can stop it quickly. Fletcher is no stranger to needles, and unsurprisingly, he doesn't like them, so I was a little nervous about the IV placement. He cried all of 30 seconds, if that. I have video proof (I considered posting it, actually). I have a feeling he will protest a little more next time as he will know what is coming.

The IV room is a little room right off the nurses station (which just happens to be directly across from our room) with two big cushy recliners. Two nurses worked to start his IV. I am cutting the and pasting the description of what happen next from Drew's blog, as his mom is a nurse and has the lingo down better. I'll even format it as a block quote so you don't think that I could actually come up with such a great description (thanks, Kristin!):
Once they place the IV, the 500ml bag of "Dextrose and Saline" is connected. Then they push what is referred to as "the anti-allergen". Due to my height advantage here, I found out last time that the anti-allergen is Decadron, a steroid. The small bag of stem cells is then infused into the line. Each treatment contains between 10-15 million stem cells. Once this is infused, the nerve growth factor is hung. Nerve growth factor is extracted from the umbilical cord serum and it's duties include to encourage growth/repair of neurons and it also enhances the potential of the umbilical stem cells that are infused. After this patient is allowed to return back to their room, while the final flush bag is infusing. This whole process usually takes around forty minutes.
Trevor was being goofy with the video camera (go figure) and got this action shot of the stem cells traveling down and into the IV. As usual Trevor's entertainment value is scoring points with the staff and other patients.

video

The IV infusion was just a warm-up for the main attraction, however, which is administration of the stem cells directly into the cerebral spinal fluid via lumbar puncture. Needless to say this part of the whole treatment gives me the most pause. The preferred method of administration is to push di.azepam through the IV to make the patients comfortable, administer local anesthesia to the injection site, and do the procedure up on the 20th floor. However, for patients who can't stay still or get too agitated, a trip to the OR and a date with some fen.tanyl is in order. This is not as ideal because the OR is down on the 3rd floor and a little more "real China" then our oasis up here on the 20th floor stem cell unit. Plus general anesthesia and all that goes along with that.

They asked me if I thought Fletcher would cooperate and, frankly, I had no idea. That kid is a mystery. Like I mentioned before, he cried less than 30 seconds when they started his IV, yet pitched a colossal fit when the nurses said "bye-bye." So the plan was to try the preferred method at 1:45 this afternoon, and if he put up too much of a fight, they had a back-up reservation of the OR an hour later. His IV from Monday was still good, so we didn't need to place another. They administered the di.azepam in our room, and then wheeled him out in his crib across the hall to the Stem Cell Transplantation Room, where Trevor and I had to wait at the door. That part was hard...

video

But it was not the hardest part. Luckily all went well with the procedure. We heard a couple small crying fits which we believe was Fletcher (his cry seemed a little lower-pitched either due to the fact he was behind closed doors or maybe because he was drugged up) but the doctors were able to hold him still and complete the procedure without the need for general anesthesia. He was gone maybe 30 minutes total. Which means (praise God) the hardest part was waiting the six hours after the procedure before we could pick Fletcher up in order to avoid a spinal headache. All things considered, that seems not that difficult. And, relative to what could have happened, it wasn't. But, if you know Fletcher, you know that laying still, head flat with no pillow, on his back, in a bed, WITHOUT BEING HELD, for six hours is not exactly in line with his demeanor. Long story short, he lasted about 50 minutes before we had to give him a little more di.azapam to take the edge off. And even then Trevor had to break the rules a little and hold him (very horizontally) for about 2 minutes to get him to sleep. Luckily he slept for a bit over three hours, so that helped immensely. The rest of the time we spent doing things like this:

video

And when he woke up, boy was he hungry (he couldn't eat 6 hours prior and 4 hours after the procedure, but because of the timing of his nap it was almost 12 hours from when he last ate). So Trevor is feeding him a bucket of rice while I type out this post and I have a feeling that we are in for a late night.

Saturday, April 25, 2009

Happy Birthday Alexa!

We want to wish a very happy seventh birthday to Cousin Alexa! She is the best cousin, friend, teacher, therapist, and cheerleader that a little boy can have.

Holding Fletcher for the First Time in March 2007

Almost Exactly One Year Later in March 2008

Alexa Today
(except now she is minus her two front teeth)

We love you Alexa and are sad to miss your birthday, but we are wishing you a very happy birthday all the way from China!

Playdate: CP-Style


Fletcher and Drew (and Trevor and Kristin) playing on Fletcher's much-beloved Starfall website (he loves the ABC games/songs and it really helps him practice imitating letter sounds). When I find some editing time I will post of video of them sharing a Big Mac switch to activate another one of Fletcher's computer games a few moments earlier. How cool is that!

Friday, April 24, 2009

Blood Has Been Shed

We checked into the Zhejiang Xiaoshan Hospital without any problems on Thursday. We received the royal treatment not only from our driver and the hospital staff, but also from Mike, another patients dad, who was waiting with some of the staff to greet us at the door and to help with our luggage. It was Mike, Drew, and mom, Kristin's, second time to Hangzhou for stem cell treatments. In fact, the blog account of their first visit was my first real look into the patient experience and a large part of the reason we felt comfortable seeking treatment here. I commented on their blog and have been corresponding by email, and phone, for the last couple of months.

We feel very fortunate that our first and their second visits have overlapped. Not only are they showing us the ropes, but they are also really fun people, and the similarities between Drew and Fletcher are many (including being born at the exact same gestation at identical weights, down to the gram!). You can check out their current blog (which unfortunately doesn't include entries from their original trip) here. Speaking of blogs, we also met another nice family from Texas who is here with their precious curly-haired angel Sierra. You can find Jason and Rosetta's blog here if you want to "meet" them and get their take on the whole process.

We spent the first day settling in our room and getting set up. Mike, Kristin and Drew took us over to the RT Mart (like a Super-Target plus) a few blocks down from the hospital and we bought some food, drinks, toiletries, etc. It is a very interesting place, with tons of exotic food and precise procedures on how to buy some of that food (the bakery and produce sections in particular). We have a dorm-room fridge in our room and then there are two common kitchens on the floor (well, one common kitchen and one closet-sized room, to be more precise) with assigned cabinets for each room and small electronics (toaster oven, hot plates, etc) with which to cook the food. Otherwise the staff will come by your room with menus and certain times of the day and you place your order with them for take-out. I will try to take and post a few pictures of our "home away from home" in a subsequent post, but all in all they are decent accommodations.

The afternoon of our first day Fletcher had a PT evaluation with his therapist, Anna. It went well. It is always interesting to see a new person get their hands on Fletcher. He always looks so much worse than when we handle him. I guess it is because Trevor and I know all the positions where he can have the most motor success and tend to hold him in those positions. He tolerated the evaluation well (thanks to my Zen mp3 player). We had free time for the rest of the night, but could not give Fletcher any food or drink after midnight because they were going to draw blood in the morning. I was a little nervous because Fletcher hasn't quite adjusted to the 13-hour time change and has been waking in the night, at which time it is easiest to comfort him with a bottle. Luckily he slept through the night (well, until 5:30, but that counts) and the nurse came in to draw some blood soon thereafter. He protested some, but recovered quickly.

The nurse did the draw in our room on our bed and things got just a touch messy, thus the title to this post.

Chinese Hospital Bracelet

Trevor and Fletcher are napping right now, and then Fletcher has PT at 2:30 followed by electric wave therapy for 45 minutes, which will conclude today's schedule. Tomorrow (Sunday) is a free day and then Fletcher has his first stem cell infusion (via IV) on Monday. Please keep him in your thoughts and prayers at that time (or dreams, maybe, as it will be around 2am Monday in the States).

And finally, since it worked so well the last time around, I am embedding another annotated slide show of our last day at West Lake and the first couple of days at the hospital.

Wednesday, April 22, 2009

West Lake

We arrived safely in Shanghai and were picked up by a driver recommended by the hospital for the three-hour drive to Hangzhou. In order to allow for any missed flights, we planned to start trying for flights on April 19th, and since we made the first one we arrived April 20th but are not due to check in to the hospital until April 23rd. So we arranged to stay a few nights in the area of West Lake in order to get over our jet lag and do a little sightseeing.

It has been a long few days with spotty sleep at best, so in lieu of writing a post, I thought I would just link to some pictures of the last two days. I have provided captions to give you an idea of what you are looking at. Despite our lack of sleep, we have been enjoying West Lake. Take a look!

Tuesday, April 21, 2009

China or Bust

Most of you know, or have figured out from the comments to my previous posts, that the overseas trip to which I have been alluding is to China. I am typing this out on the plane en route and hope to be able to post it from our hotel room.

I have just finished my dinner of grilled New York sirloin steak with pepper rub, red wine and vegetable sauce, roasted portabella mushrooms, potatoes au gratin and grilled green and white asparagus, which I finished off with an assortment of petite pastries (after passing on the fruit and cheese cart… how am I to have room from my Skysnacks ™, mid-flight refreshment of Taiwanese-style noodle soup with prawn paired with raspberry brulee cake, or my pre-arrival light meal of seasonal fruit , pastries, and choice of swiss cheese omelet or congee?). Let me tell you, first class is the only way to go on a 14-plus hour flight.

Unfortunately, in order to fly first-class sacrifices had to be made. But not by me. Continental does not allow children to fly in first class as passriders (that is, non-revenue airline employee passengers), so Trevor and Fletcher are in coach while I get to kick my complimentary-sock-adorned feet up at the front of the plane. In my defense, I offered to stay in coach with Fletcher and give Trevor the first-class seat, but he insisted I take it, and who am I to protest?

Our travels did not get off to a great start as we were bumped from our scheduled flight yesterday from KC to Newark in favor of a Continental pilot trying to get home from Hawaii (you have to get creative with your itinerary when you passride because it is all standby). However everything worked out in the end because we got to spend an extra night at home instead of a night at the Newark Airport Hampton Inn and still made the same flight from Newark to Shanghai that we originally planned to take.

So, enough about the journey, you want to hear about the destination, right?

After over a year of research, calling around, hand-wringing, deliberation, and prayer, Trevor and I decided to purse donor umbilical cord blood stem cell infusions with Fletcher. There is a domestic program at Duke where children with CP can have infusions from their own cord blood if banked at birth, but we did not bank Fletcher’s (we were too concerned with keeping both he and I alive to even think about banking the cord blood, but even if we had, with my high blood pressure and clotted placenta, they probably would not have been able to use the blood anyway… at least that is how I make myself feel better about it). Fletcher is on a waiting list at Duke when the time comes that they expand the clinical trial to include infusions from sibling cord blood, which is why we aren’t hesitating to bank Smykeeny Baby’s cord blood. But the nurse I spoke with at Duke didn’t think the program will be expanded for another couple of years at the earliest, and even then, they may want to give Fletcher immunosuppressant drugs before the infusion which is not without its own inherent risks.

And, while I do believe that seeking treatment in China today is somewhat premature, and that so much more will be discovered about stem cells in the next five to ten years, given Fletcher’s age and the nature of neuroplasticity, I feel like now is the time to try this therapy with him. We have chosen to travel to China because the treatment offered by Beike Biotech seems like the most comprehensive, and safe, program available. I will be writing more details about it in the ensuing month, but I can tell you now that we are hopeful, yet realistic, about the improvements Fletcher stands to gain through this treatment. So, check back frequently for updates as the hospital’s internet allows. In the meantime, if, in addition to the Beike hyperlink above, you would like to read more, including blogs from current and former patients, check out www.stemcellschina.com.

Wednesday, April 15, 2009

First Flip

No, Fletcher has not learned to do somersaults. The title refers to our new little gadget. We are not a gadget family, necessarily, but my sister recently got a flip video recorder and has been carrying it around and actually using it (vs. just storing it under three inches of dust in the cabinet, which is what I do with my current camcorder), so naturally I had to get one myself (by the way, after I bought ours online I spotted the minoHD with tripod on sale at Costco). It is not that our "old" camcorder is a relic or anything (got it when Fletcher was just moving from isolette to crib in the NICU, so it is barely over two years old). In fact, it is a hard-drive recorder, so I don't even have to mess with tapes. Problem is, we can't find the editing software, and the Flip just makes it SOO easy!

I just unwrapped it mere minutes ago, found Fletcher playing in his playroom and pushed a button. Then I plugged it into the computer and pushed a couple more buttons and here it is. Not the most exciting footage (although personally I am impressed at how well Fletcher is starting to follow directions when I ask him to bring his hands up) but I thought I would share our "first flip." Enjoy!

video

Sunday, April 12, 2009

Happy Easter

I am happy to report that Fletcher had a fun-filled Easter holiday. I am feeling more confident in his immune system, so it was a full-contact holiday complete with trips to the mall, a children's service at church, and lots of cousin time.

Easter Bunny visit with cousins Trey, Maren and Michael
(Alexa misses all the fun, darn school)

I caught a Fletcher rabbit

Easter Morning

You can't really tell from this picture, but the box to the left in Fletcher's Easter basket is a chocolate cross instead of a chocolate bunny. He is still too young to appreciate the meaning behind holidays, but this is my first attempt to bring the focus back to what is important about Easter. I know, using a Hershey's chocolate cross in a basket is somewhat of a lame attempt, but it is a start. Maybe one day I can be as bold with my faith as a few of my favorite bloggers, which, if you are interested, you can find here, here, and here.

Saturday, April 11, 2009

Too Much to Write

I have gotten so backed up on blog posts, and we have so much going on, that I don't even know where to start. So I have decided I am not going to start, at least not tonight. Just wanted to check in and let you know that we are still here, and everyone is healthy and happy.

The madness around here stems from two major issues. First, Trevor has been working extra shifts to make up for my lack of income, and secondly, I am on a major therapy binge. For the last year I have been compiling a list of therapies requiring travel or other significant time dedication that I wanted to sample before the baby arrives. A couple of months ago I realized that June is quickly approaching... thus the binge. In the past month Trevor and I have traveled to Philadelphia and St. Louis and later this month we are even heading out of the country. We've attended seminars, seen new doctors and therapists with special training, adjusted Fletcher's diet (well, it's a work in progress), and have basically (finally!) embraced the role of ultimate specialist trained in Fletcher Smykay.

I make no promises, but hopefully I will make some time in the coming weeks to post a little about all of that, and more. In the meantime I will leave you with Fletcher's mugshot, a.k.a. the home-made passport photo I took for Fletcher's Visa application for said out-of-country trip.