Donate Life

April is Organ Donor Awareness Month

If you think about it, April is the perfect month for this.

Spring is the renewal of life from the dormant winter months; and receiving the gift of life and getting that second chance is much like being "born again".

I just wanted to take this opportunity to celebrate 6 donors and 6 recipients. 

YES, SIX! I never would have thought in a million years that organ donation would impact me so profoundly.

First, is my son, Weston. 

Weston's hero gave him a second chance at life by donating their liver.

Second and third, are our fellow pediatric liver recipients:

Rowan (biliary atresia) and Ben (alpha 1-antitrypsin deficiency)

 

Fourth and fifth, are two friends.

Shawn received a heart from his hero.

The other received a kidney from a living donor.

Finally, another family member.

Although he is no longer with us, Dudley's hero donated his kidney.

Amazing.

If you are curious about organ donation, I invite you to visit the following sites:

Donate Life America

United Network for Organ Sharing

If you know that you would like to provide up to 8 people with a life-saving gift, you can join your state's registry by clicking:

Commit to Donation

Playing Catch-Up

Sorry I haven't posted in a while. Nothing really crazy has been going on, just trying to get things organized and under control in the house and yard.

Let's see...

1. Weston has a tooth!! One little chomper coming in on the bottom.

2. His check up last week in Houston went super well. They sent Weston's picture to the American Liver Foundation, Texas Chapter to use for Donor Awareness! Thanks Robin for being so awesome and talented!!

3. Yesterday marked 2 month post transplant. Wes and New Liver are livin' large.

What else...

The foot FINALLY made it to the mouth!

 

 

 

 

Yea for a normal sized belly!!

My most precious, precious gifts.

Little Princess

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Weekend In Review

March Madness



Real men wear pink boas



Bubbly bath



E FINALLY got a job! New hostess at Logan's.



Big boy holding his own bottle



The poor cat will never be the same...

Before They Could Change Their Minds

Ready



Set



Gone!!!!!


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Tastes Like Skunk::Day 4

OH. MY. GOD.

In this whole liver fiasco, I have NEVER been more frustrated than today.

In four hours, we had 5 different plans.

NO communication between teams.

UGH.

BTW, yes we are still in the hospital, if you hadn't guessed.

The latest plan, as of 6pm:

Because W's peripheral IV was failing, switching his antibiotics to an oral version (which "tastes like skunk"). Tomorrow morning, he will go down to have anesthesia sedate and draw labs.

After that...well, that is still cloudy.

Oh, learned a nice little item of interest. Anesthesia evaluated his peripheral venous access status (the day he was stuck EIGHT TIMES) and he has none.

NONE.

ZERO.

SO, that means IF he needs blood drawn, its a femoral stick (sedation and doctor)

and if he needs IV meds, its a central line.

I apologize that I am coarse with this posting, but I am honestly so frickin' sick of being in a hospital and having my family broken up. Billy and I are switching every afternoon so that we both get to spend time with Emily and get a break from the 5 Star experience that is being inpatient.

**Deep, cleansing breaths**

On a brighter note, Weston had a special visitor today. Dr Meyer (his surgeon in Austin) heard we were here and came by to say hello. :-) He is such a nice man. Truly one of our favorite doctors...and we have A LOT of doctors.

The Mommy changed W's dressing and packing this evening. The nurse was impressed at my ability...I guess she didn't know I was a Mommy Nurse. ;-p

Well, can't wait to see what tomorrow holds...

It may look like a sweet cuddle, but he really has T-Rex in a sleeper hold.

PS: Totally had a "Mooooooooooom!" moment with Weston tonight. He was hamming it up and FLIRTING hardcore with his night nurse, and I leaned in to kiss him on the cheek and he so pushed my face out of the way, like I was messing up his game! Humpf!

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Tired of Hosifuls::Day 3

Sooooooooo, the surgical and GI teams are thrilled with W's wound and progress. Staph Aureus is still the only thing that has grown from the wound culture. They say, send him home tomorrow on oral antibiotics and continue his wound care at home. Infectious Disease, on the other hand, is freaking out and wants him to have iv antibiotics thru Friday.
...
Seriously?? They are supposed to hash it out between them. We really hope they let us go home tomorrow and salvage the last couple of days of Spring Break.

W was more himself today. We went for a walk and he flirted with everyone we saw.

Checking out his feet.



Trying to ward off those gross big sister germs.



My Emmy.


Spoiled her with a huge bubble bath in Mommy's tub.


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Stupid Abscess, Day 2

I'm going to start things off on a happy, non-purulent note...

I was woken at 9am on the dot, by my snuggly E saying that it was time to wake up because her tummy was growling and she was hungry.

:-)

What time is it?

Time for some sickly sweet cuteness!

We had a nice morning getting things picked up and ready to visit Wessy and Daddy at the "hos-fi-al".

My little Glamour Girl

She wanted to get in with Weston and play
He was happy to let her. <3

The Daddy and Weston did not have such a good night. They ask us to record all the times we feed him and how much...

Overall, Weston is doing really well. So far, the only thing growing in the cultures is Staph Aureus (a common, native skin bacteria). The wound stays open and they pack it with a wet gauze, so that it adheres to the junk tissue in the wound, and acts as a mini debridement when they change the dressing. He has dressing changes twice a day and gets premedicated with morphine before hand.

He has been super restless today as well.

I am sure the poor guy is hurting a bit from the surgery and is just generally uncomfortable.

Which brings me to my next topic...

W was stuck an ungodly EIGHT times yesterday in attempts to get an IV.

Along with the bruising from the failed attempts, check this out:

 

Yep. That's bruising in the shape of fingers from holding his arm down.

...

I think I may punch someone.

Can you call CPS on an ER Department??

On a more pleasant note. Since he is doing well, and no longer running fever, they are talking about sending us home Wednesday. Yea!! Keeping my fingers crossed that this happens and we are able to enjoy the tail end of Spring Break together.

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Unlucky Number 13

Number 13,
We had a thing. You were my lucky number. All of a sudden you have turned on me. All this crap started with W on August 13th. We were notified of the impending Houston stay on January 13th. Now, on March 13th, Wes starts running fever and ends up having yet another surgery and hospital stay.
I am really starting to feel betrayed.

Weston had been very
fussy and restless starting Friday evening. Last night we noticed a slight low grade fever (99.4-ish). By 10 this morning, he was over 101 and had redness and tenderness around his incision.

Now, he has had a piece of suture sticking out from one part of the incision since his transplant. My theory, is that the exposed stitch created the opportunity for bacteria from skin/baths/life get in.

So now he has an "abdominal wall abscess". Abscesses need to be drained and cleaned out (irrigation and debridement). In and of itself, not a huge deal. BUT for immunosuppresed W, any infection can start the rejection process. FRICK!!

Long story short, his surgery went well; he is getting a PICC tomorrow; his labs look great

And, The Daddy did a great job handling all the chaos. I was at work and he did the whole ER/surgery on his own...and took pics:



Funny, he doesn't look sick.



"Yep. Here I am. In the hospital. Again."



After his surgery, doing great.

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Toddler Thursday

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First Austin Check-Up

We got up dark and early to go see Dr. Zweiner and Nurse Pheobe for the FIRST time since W's transplant.

They were blown away with our little man.

One person even said they would have never known he had been sick by looking at him now. 

Yea! :-)

Our labs are still pending, hopefully they are all ok

Wes cried more in the waiting room than when he was stuck.

We saw Ms. Robin yesterday and got Weston's 6/7 month portraits taken.

For a sneak peek, check out her blog.

Home!!

A more than full car




Playing at home for the first time in 1.5 months



Now able to enjoy playing in his bouncer



Welcoming committee



That look says it all



My sweet loves!!



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