Saturday, May 30, 2009

We're Back

We got back on Tuesday, but had to get a little creative with our travel arrangements. I have so many things to post, but am focusing right now on getting ready for Fletcher's little sister, who will be here in less than two weeks at the latest!

Once I have had some time to regroup I will resume posting, filling you in on the last treatment, some technical aspects of the stem cell infusions, and sharing some photos of all the fun we had along the way.

I can honestly say that I have no regrets about the trip and regardless of clinical improvements, I am glad we did it.

More to come...

Wednesday, May 20, 2009

Happy Birthday Trevor

Another patient's father figured out a way for me to access the blog, but I can't post pictures or videos or fix the layout. So, I will try to put up some basic posts and jazz them up a bit when I get home.

In the meantime I would like to wish a very Happy Birthday to my husband! Johnny helped me order a cake and we celebrated this afternoon with the other families on the unit. A group of us are also planning to go out tonight to a local restaurant, which, from what I have heard, gives a whole new meaning to fresh seafood (Mike, it is the restaurant you ate at with Simon).

Check out that Cake... Tasted as Good as it Looked

Birthday Boy Cutting the Cake

As I mentioned above, that night a group of us went to dinner. An interpreter planned on going with us, but was detained at the last minute, so instead an intern who was helping out at the unit to practice his English came along, which proved to be a little more, um, interesting. I think we figured out pretty much what everything was we were eating, and if not, I don't want to know.

There may have been a large communal dinning room at this restaurant, but we didn't see it. Instead we were shown to one of many private rooms. There were no menus. Rather, we were led to a large room containing the food we were to eat... raw, uncooked, and in some cases, still alive. You write your order down on a sheet and give it to the chefs, who then prepare it and serve it family style.

Fish Tanks on the Left and Sample Plates on the Right

About as Fresh as You Can Get

Unless It is Still Swimming Like This Guy

Some of the Many Unidentified (and Untranslated) Objects

Each Table has a Huge Lazy Susan and Everyone Helps Themselves (by the way, that is snake in the bottom left... tastes like really boney chicken)

Enjoying New Food, New Experiences, and New Friends

Monday, May 18, 2009

Sixth Treatment

Fletcher received his sixth stem cell treatment this morning, his fifth via spinal delivery. The doctors decided to go back to square one in terms of sedation and he received only di.azepam. They also took into consideration what I suggested about the anti-allergen, and since he had already received five treatments with no evidence of allergic reaction, they decided his was low-risk and proceeded without the de.xamet.hasone, but will be monitoring him extra carefully for any signs of an allergic reaction. Pre-treatment prep wasn’t too bad. He cried as they placed the IV, but quickly recovered. The administration of the di.azepam was via IV, so no enemas or IM shots and he was nice and loopy going into the treatment room. We’ve noticed that after the administration of the di.azepam he kind of makes noises like a drugged-up baby Chewbacca…

What do you think?

Trevor listened at the door during the procedure while I chose the effective method of hair-drying to once again distract me from what was going on next door. He was calm as he returned and has been pretty good ever since. Maria-Josephina and her family let us borrow a Baby Einstein dvd and Trevor and Fletcher are laying quietly in the crib watching it (I did mention the crib in the room is the size of a twin bed). Only one more treatment to go!

[Scene: Same small hospital room, a little more than five hours later.] Trevor is bending the rules just a touch and holding Fletcher (who is still parallel to the floor) on his lap while we count down the final few minutes of bed-rest. Fletcher initially took a nap for about two hours, but wasn’t too happy when he woke up. He ate, fussed, screamed, choked, spit-up, calmed—lather, rinse, repeat—for the couple of hours. He seemed to be in some pain, so we gave him some Tylenol and finally, after our modified bed-rest plan in daddy’s lap, he settled in for another hour nap while Trevor watches Chinese platform diving on mute. Oh yes, we lead a glamorous, jet-setting life, don’t we.

Technical Difficulties

I am having a problem accessing Blogger from China. So I have asked my mom, the reluctant commenter and lover of weird trees, to post this message to let everyone know that unless Blogger access is restored in the next few days (and I am not holding my breath) I will be typing my posts in Word and publishing them once we return to the States at the end of the month. We hope to be home by May 27th, so look for a new post sometime around then. In the meantime, I am emailed your comments, so feel free to post some to cheer us on in the homestretch.

p.s. Fletcher is doing fine with his treatment today, so only one more to go!

Friday, May 15, 2009

Fifth Treatment

A little after noon on Wednesday Fletcher received his fifth stem cell treatment, fourth by lumbar puncture. Did he tolerate it better than last Friday? In a nutshell, he has done better, and he has done worse, the latter by a long shot. This time it was pre-treatment that was probably the hardest part. Unlike the Ramones, this boy just doesn't want to be sedated.

They started the IV quickly, but Fletcher has figured out what happens after a couple nurses show up with the stainless steel tray and tourniquet in hand, so he started preemptively sobbing this time. And just when I got him calmed down from the IV stick, it was time to try to sedate him.

The first spinal they used di.azepam pre and post treatment, with minimal results, although he did fall asleep afterward, but I think it was just because he was already tired. Second spinal they used di.azepam pre treatment and chl.oral hy.drate post treatment. This resulted in a one hour nap. So, with seemingly at least a little success, they used the chl.oral hy.drate pre treatment for his third spinal, and that is when things got really bad, and they ended up doing a phe.nergen IM shot post treatment which translated into a two-hour nap, but that may have been because he was just plain exhausted by screaming at that point. So, following the natural progression, this time they tried the ph.energen IM shot pre treatment.

And surprise: it didn't work. After I calmed him down after the painful IM shot (once again, he shrieked like never, well once, before) I tried swaying and rocking him to sleep for about 30 minutes to no avail. When the doctor would come check on him he would cry, because, since he has yet to be completely sedated during the prior treatments, he knows what the doctor plans to do. I just about had him asleep and they suggested topping off his IV with a little di.azepam to tip the scales just a bit and send him over the edge into a nice slumber. I agreed and it was a mistake. He went from eyes drooping to wide open, but he was definitely loopy. He kept "oohing" at me a grining. So we decided that was the best we were going to do. The fact he is not asleep doesn't really affect the procedure because he doesn't move once they are holding him in place. And it doesn't actually hurt because they use local anesthesia. It is just better if the child is asleep, though, as you can imagine.

Personally, I think that the doctors are sabotaging their own sedation efforts, by giving the patients an injection of "anti-allergen" medication (de.xamet.hasone) in the IV before they try to sedate them. I know dex is a steroid, and my nephew always goes berserk after he gets steroid treatments for his asthma. So I did a little online research and found the following documented side-effects for dex: difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness. Hmm....

Fletcher cried a bit during the procedure, but was calm when they rolled him out of the treatment room. We went back to the room and read books, took a two-hour nap (me, too!), and then passed the rest of the time eating crackers and drinking rice milk (borrowed from our British neighbors since I had run out the day before). He got bored and upset a handful of times, but was relatively easily calmed (well, nearly anything would be relatively easier than Friday) and all in all it was an uneventful, but long, six hours.

We did a few laps around the unit after we got the okay to be vertical, and an hour later, were greeted by Trevor's return! I thought Fletcher would be happier to see him, as he would light up with a big grin every time I mentioned daddy's name, but he actually didn't seem to care one way or the other. I, on the other hand, could not wait to see him so I could hand Fletcher over and actually take a nice long shower without needing to rush into the next room at a moment's notice. Oh yeah, and because I missed him, that too. Of course.

Sunday, May 10, 2009

Happy Mother's Day

I was expecting Mother's Day to pass with little fanfare as Fletcher and I are solo here in China. So, imagine my surprise when Mike and Kristin walked into my room yesterday afternoon with these flowers and candy in hand. Sweet, huh. Mike asked Johnny, one of the translators here who really has gone over-and-above for us as well as the other patients and families, to help him navigate some local shops and they snuck out to find a florist Sunday afternoon and got some flowers for Kristin and me. They couldn't have come at a better time, either, because the 20th floor was smoky from a kitchen misstep and the lilies smell fabulous. So thanks again Mike, Kristin and Drew!

Unfortunately, this was the last kind act from this family (who have really been an incredible help with Fletcher over the past week) as they left this morning. I miss them already, sniff, sniff.

It has been a pretty laid back weekend here. Fletcher woke up not much happier from his phen.ergen nap and was a little feverish and just crabby and uncomfortable for the rest of the day. Thankfully he did sleep decently Friday night, despite napping on and off throughout the day, and woke up happy and temperature-free on Saturday morning. We had planned to go to West Lake and hang out with Drew's family on their last weekend here, but since Fletcher had run a temperature the day before, the doctor wanted us to stick around the hospital all day.

So we kept Kristin and Drew company as they packed and just chilled out. I think Fletcher may have started taking an interest in Drew's Little Einstein videos, which is actually pretty exciting for me as he has never really taken an interest in TV before. In fact, he is watching an episode right now as I type out this post.

This morning we said goodbye to Mike, Kristin and Drew, took a shower (Fletcher is slowly warming up to the idea, but you really have to ease him into it) and headed out for groceries. It was really hot (mid-90's) and I got a good workout schlepping Fletcher in his mei-tai plus two shopping bags back from RT Mart. I actually found some avocados, so I whipped up some guacamole for dinner and Fletcher couldn't eat it fast enough. I guess he has had his fill of eggs and rice.

We capped off the afternoon with a party for another patient from Sweden who turned two today. He had to celebrate without his twin brother and mom, but his dad knows how to throw a party so fun was had by all. I will post a picture in the next slideshow, but I want to make sure the parents are okay with their babies' pictures being posted to the Internet first.

All right, I guess Fletcher hasn't quite gotten hooked on TV yet, he is yelling for me so I better run! Next treatment is Wednesday, which is also the day Trevor gets back into town, so I will post the next update then.

Thursday, May 7, 2009

I Had a Feeling It Wouldn't Last

Resting peacefully, right? I guess you could say this is the calm after the storm, or possibly in between storms as it is too early to tell. Up until today's treatment Fletcher had done amazingly well with the transfusions (via IV and lumbar), almost stepford-wife-perfect. It was really quite odd. He previously had a little trouble staying settled for the full six hours after the procedure, but his actions during the transfusions had been calm, cool and collected. I knew it couldn't last, and it didn't.

Since the di.azepam they'd been giving him didn't really sedate him, they decided to do the rectal ch.loral hyd.rate pre-treatment. It made him drowsy, but in a fussy way, not the spacey way the di.azepam had made him feel. I heard him cry during the procedure, but I couldn't do anything about it and it just made me nervous so I went back to my room and tried to distract myself. He was okay when he came out, and happy enough when Kristin was entertaining him while I called Trevor go give him an update, but when they started doing his post-treatment vitals he just lost it and couldn't get it back together. He cried for a long time. I wasn't watching the clock and I am very bad at estimating times, but I am guessing it was a good 30 minutes of various degrees of uncontrollable sobbing.

I tried singing, and patting, counting and cooing, but nothing was working. The one thing that would probably console him is picking him up, but that is the one thing I could not do. I had to roll him onto his side because the saliva and snot production kicks into high gear when he screams for that long and if positioned on his back he would choke. I rang for a nurse and she brought the doctor who decided that an intramuscular injection of phen.ergan was the way to go. While they were gone to get the shot Fletcher vomited up a nice big pile of mucous due to his prolonged crying jag.

I don't think I have ever heard Fletcher scream like he did when they gave him the IM shot. I had to give myself plenty of IM shots during my IVF days and I can tell you that relaxing the target muscle is key. Fletcher cannot do this on his own, so I imagine the shot was pretty painful. He had his eyes closed during most of this fussing/crying episode, but when the nurse gave him the shot his eyes opened wide and he just looked at me with such an accusing stare. I wanted to cry myself, but I knew that would just make things worse, so I willed myself to be the strong, stoic, comforting mommy.

After a couple of minutes the shot kicked in and he is resting as pictured above. He has been asleep for about 75 minutes now, although he did wake up about 20 minutes ago, fussed for a minute, vomited up another mouthful of mucous and then promptly fell back to sleep as I lightly cupped his head and stroked his hair like I did when he was in the incubator in the NICU. I spoke with the doctor and we both agree that the vomiting is due to him swallowing too much saliva and mucous during his crying fit and nothing more sinister. It is already over two hours post-procedure and we have been given the green light for food and drink, so hopefully after a (cross-your-fingers) nice long nap I will be able to distract him the rest of the time with some graham crackers and rice milk.

To leave you on a happy note, I have included a slideshow of some random pics around the hospital over the last couple of days.

Wednesday, May 6, 2009

Electric Wave Therapy

Miss Kim (do you love it that I am calling you that?) asked a question in her comment to the last post that I thought I would answer, thereby encouraging any questions and more comments to these posts, as I really enjoy reading comments and hearing from readers (hint, hint).

She asks what exactly is Electric Wave Therapy? Basically, and I say basically because I have a very basic knowledge of the concept, it is electrical muscle stimulation. It seems like a passive activation of muscles in Fletcher's upper arms and thighs. I did a quick search and found this explanation in a very reputable medical text (ha).

In any case, even if it has no benefit, it doesn't hurt Fletcher (Mike next door tested it out) and in fact Fletcher seems to enjoy it, or at the very least is indifferent. Each application (arms and legs) is 20 minutes and I usually hold him during the session and we read or play his video game, but sometimes I lay him down on the bed to mix it up a bit, as I did in this riveting video.

Monday, May 4, 2009

We Miss Daddy

But we are hanging in there. Trevor has been gone just over three days and we have 12.5 to go (but who is counting). Luckily we have some pretty great neighbors here and Mike and Kristin have been looking after Fletcher when I need to grab a shower, cook some food, or the the like. We had a nice long weekend with no treatments, so we basically just relaxed and bummed around the hospital, took a few walks, caused a commotion at the KFC on the bottom floor of the RT Mart (we were seated in the front window and felt a little on display), and played a marathon-game of Mexican Train dominoes (Kristin and I tied for first place and beat out the "home team" Feledems... a double dose of beginners luck).

There is a new girl on the block, Ella, who is actually not so new as this is her third trip here and she is not yet two years old. She went with her mom and aunt to the aquarium on Saturday and Drew borrowed her gait trainer while they were gone, which he so nicely sublet to Fletch for a few minutes. No huge success as far as making it move (although he did take about five steps, collectively, which isn't bad for the first time) but it did make for a nice picture positioner.

Say Cheese

We bid a fond farewell to Sierra and her parents this morning and promptly thereafter began prep for Fletcher's third stem cell treatment. Usually these are done in the afternoon, but since Fletcher has what the Doc said was "special blood" meaning he is RhD negative (which is less common in Caucasian babies (about 35% are RhD negative) and really rare in Asian babies (less than 1% are RhD negative)), the stem cells he receives are processed a bit differently, and so sometimes he will have transfusions in the morning as well. Only one other child on the unit at this time is RhD negative.

Fletcher once again was surprisingly composed during the IV stick and even smiled at the nurses when they were done.

Administering the Happy Juice

Feeling No Pain

This Part Wasn't Any Easier

He came out maybe 15 minutes later, no worse for the wear. Fletcher's doctor (Dr. Mary) said that Fletcher didn't cry at all during the procedure, but was wide awake. We went back to our room and read a couple of books and listened to some music for about 70 minutes before the boredom hit and Fletcher wanted UP! I distracted him best I could, Mike came over and brought one of Drew's Little Einstein DVDs, Kristen came over and counted for him in Mandarin, and while both those were marginally effective for 10 minutes or so, they were obviously not the five-hour solution we needed. The dia.zepam we tried last time didn't work, so instead Dr. Mary suggested a little rectal chlo.ral hyd.rate. That, plus a little rice milk, did the trick and Fletcher is snoozing away while I type.

Hopefully he will sleep at least until 3pm (it is 2 right now, so we have a chance) at which time he gets to eat for the first time today. I will admit it here for all to read: I had a "bad mommy" moment this morning. Fletcher can't eat two hours prior to the infusion or four hours after and of course my alarm clock (a real beauty I got across the street at the RT Mart) didn't work (I concede that there may have been a component of operator error as it is not digital and I foolishly didn't do a test run). So we didn't wake up in time to eat prior to the procedure. But, to make it up to him, I ordered Fletcher his favorite local Chinese takeout (Homestyle Tofu, he thinks it is scrambled eggs). So I think he will forgive me.

Tuesday through Thursday we have our regular routine of PT, stander time, and electric wave therapy, and then Friday afternoon is his next stem cell treatment (another spinal application) after which we will be over half-way done!