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.

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.

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!

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.

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.

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!