Wednesday, April 29, 2009
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.
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...
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:
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
Friday, April 24, 2009
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).
Wednesday, April 22, 2009
Tuesday, April 21, 2009
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.