Port placement & transfusion update

Chengbin's surgery went well & he has a port placed right under his collarbone on his left side.  We were told it could be used right away to do blood draws & transfusion.

He woke feeling pretty yucky. He got some morphine & a Popsicle so he was feeling better in no time!

While he was in surgery, mommy made a run to Panda Express so Chengbin can enjoy his beloved 'panda lunch' with us! :)  once he was cleared to eat, he started in on his panda lunch! He was very happy to finally eat, & when it was time to move from recovery to the pediatric ward, he ate on the way.

 It was quite a sight to see this little boy who had just had surgery eating his chicken w chopsticks as he was rolled on to his room! He inspired many smiles & began waving at people w his other hand! Lol!!

We made it to his room and watched some shows on the kindle while we waited for his blood results & red blood cells from the blood bank.  It's funny how as a parent of a child w a relatively rare condition, we become our child's greatest advocate.  So we have the computations from the thalassemia clinic and check each time blood is ordered to make sure he receives the optimal amount. ;)

The rest of the hospital stay was unnecessarily long & drawn out.  We waited around for blood until he was already asleep at 11pm.  Mama was immediately upset as I looked at the bag & saw it expired that day.  We were given the oldest blood instead of the freshest.  Which in turn means he will need another transfusion soon.  (A bag of older red blood cells will naturally have more that are past their prime or have already died.). I let our hematolgist know so we will be testing his Hgb in 2 weeks to see where it's at.

His blood transfusion lasted about 3 1/2 hrs.  No need to go too fast when he's sleeping through it anyway. :)

(He enjoyed kickin' it in nothing but underwear! Lol)

We woke up, had some breakfast and waited not-so-patiently to be released.  Chengbin actually got all dressed & packed everything up even with tubes still hanging out from his port! Lol

Finally the nurse came to take out his port access so we could go.  Here's how it looks the day after...

He's bruised and sore but you can't really even tell it's there!  Next appt is in 2 weeks- finally a much needed break from dr offices...

Praying this improves his quality of life greatly!

Thanks for stopping by,

Fannie, Matt, Kate, & Chengbin 

The next step- Port Surgery Today

Well, after a total of 12 sticks to get his last transfusion and much discussion & prayer, our son is getting a mediport today.

A mediport is a device that is placed on a main vein and stitched into muscle under the skin to provide easy access to his veins for bloodwork & transfusions.

Once he has his port we can get access to his veins on the first stick every time.  This will be huge for him, reducing the time he has to spend at the hematolgist's office and greatly reducing the trauma of multiple sticks/digs trying to access a vein.

 Here's my silly boy waiting for his surgery to start. :)

Thanks for stopping by!

Fannie, Matt, Katie, & Chengbin 

Donuts & Trains

 
 

After a very, VERY long Friday transfusion day.  We decided to venture out for a Saturday morning donut breakfast.  Since we are finally living in an area with Krispy Kreme, we thought 'nothing but the best' for our boy's first donut!

On the way we noticed a train in a park we knew we'd stop at on the way back.

Krispy Kreme was a hit w the little guy! He loved watching the donuts on the conveyor belt as they were fried & iced.  He couldn't wait to try one! We all had one, fresh & hot. :)

Then we decided to go check out the train... We got there right as a little train that gives rides around the park pulled up!! Chengbin was incredibly excited and hopped on for his ride! It's such an amazing thing to see this precious little boy experience things that are so exciting to him.  He loves trains and we love watching him light up as he finally has an opportunity to explore some of the things he loves.

 

"Driving" the red train!

He loved the little train that went around the park!  I LOVE smiles like this!! They melt this mommy's heart!!

And some iphone pics of our day!! ;)

 

What a great weekend!!  We're looking forward to next weekend even more!  Can't wait to share where we're going next!! ;)

 

Thanks for stopping by,

Fannie, Matt, Katie, & Chengbin

First trip to the dentist

The first month home you find yourself in triage mode.  There's only so many doctor appointments a 5 year old child is going to sit through! (Especially when so many involve needles.)  So in our first month home we focused on Chengbin's immunizations & thalassemia treatment...

Now we are in the 2nd month & while there is a lull before we go to the thalassemia clinic for tests next month, I thought it was a great time to tackle the dental side!  Believe me when I tell you, he has extreme dental needs.  Damage on his upper front teeth. Chipped teeth.  4 molars with serious cavities.  My kiddo pretty much lives life w a toothache! 

So off to the pediatric dentist we went!  It was a new dentist office for us, since we recently moved.  I had NO idea what to expect and was SHOCKED when I walked in the door to this amazingly themed space!!  It looked like Disney had designed a finding nemo area, it was just so well themed.  Needless to say, it helped Chengbin!  He explored the waiting room, played games, & was a happy kid waiting to see the dentist.

 

Then the time came to go back and check out those teeth!  He did GREAT!!  He took his x-rays, let them see his teeth, and to my utter shock and amazement, even let them clean his teeth!  (Guess that Crest Spinbrush helped prepare him!)

 

So the not-surprising verdict is he needs his teeth repaired under general anesthesia at a hospital.  There's just TOO MUCH work to do in the dentist office expecting cooperation from him.  With that news comes a whole new set of issues!!  Trying to set up a dentist in one state and deal with hematologist in another state is pretty much impossible, so we're coming up with a plan.  Hopefully we'll get it all worked out and he will have his teeth repaired in the next couple months.

 

Can't wait to see his beautiful smile with no more toothaches!

 

Thanks for stopping by,

Fannie, Matt, Katie, & Chengbin