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!

9 comments:

Erika said...

I'm happy to hear things are going well and that you have some support & help while Trevor's away. I love reading all the updates! Keep them coming!

AshleyS said...

I wish he'd give Clayton some tips on how to be happy during and IV stick!

So glad things are going as planned--I hope you start seeing results soon!

katzlowe said...

Sounds like all is going well. Glad to hear it. Hugs to Fletch...take good care!

katzlowe said...

Sounds like all is going well. Glad to hear it. Hugs to Fletch...take good care!

magen said...

Hi!
I think about you guys all the time. I cried too when he was wheeled away for his lumbar puncture...what a sap! I love the pics showing off his great arm range of motion! Take care of yourself and our little guy-what a trooper.

Bird said...

He looks just like his daddy is that first picture--so cute!

Kimberly said...

I may have missed it but, what is electric wave therapy? I love his smiley face in the gait trainer pic!
Miss Kim

Skeeter said...

Sounds like everything is going smooth! I am thankful that you are posting updates, as I am enjoying to read them and follow you guys through this journey!

Erin Robbins said...

That's so great that you have other families to spend time with there; especially since they are going through the same experience. But, I know Trevor misses you both too. Thanks for all the updates too! Take care.