Tuesday, April 16, 2013

Big News

Theo has something to share:

He loves his aunt.  He actually loves all four of his aunts (lucky him!), but today he is specifically talking about his Cool Aunt Whit.  On April 25th, Whitney, my older sister, will give Theo a better chance at a high-quality, full life.  That's right: transplant is scheduled for Thursday, April 25th!

Theo (several months ago) and his hero
If that date sounds soon to you, you are not alone.  I was completely caught off guard when Whitney told me the plan.  It's not that I am surprised that transplant is actually going to happen, because we have planning for this since he was born, it's just now that it is real.  And while it is so exciting, and definitely the right thing for Theo, it is also a bit daunting.  It's definitely not very often that your older sister and your son simultaneously undergo major surgery.  
Why is it the right time?  Theo's development has slowed.  He's still not eating.  He's still not walking.  His reflux is still not totally under control.  Having a healthy, functioning kidney will make a big difference in all parts of his development, we are told.  We're also told that his energy level will improve as a result of transplant.  We are not so sure that we can handle that!  This kid is already FULL of energy.  He talks or sings all day long, he is the most wiggly little guy you've ever seen, and he's all boy.  Case in point: Theo got his first bloody nose last weekend while throwing himself down the slide face first.  (Yes, I was standing right there and felt like the best mom in the world at that moment.)  Did a bloody nose stop him from going headfirst again at the next opportunity?  Absolutely not.  I really can't imagine what more energy will look like.

Hello, stud!
Did I mention that Theo no longer looks like a baby?  Thanks to a sweet buzz cut last weekend, our little guy has turned into quite the stud.  I think you'll agree.  He definitely looks tough enough to brave surgery now.  

As a quick overview, here is what we are preparing for:
  • Whitney arrives on Sunday, April 21st and will have a few final tests prior to surgery
  • Theo will be admitted to the hospital on Wednesday for another battery of tests (chest x-ray, blood work, EKG, etc.)  Whitney will arrive at the hospital early Thursday morning and will get prepped for surgery.
  • Approximately 1 hour after Whitney's surgery starts, Theo will be taken into the OR.  In the ideal situation, he will be open and ready to accept his "new to him" kidney as soon as it is removed from Whitney.  Whitney's surgery will take several hours, and Theo's may last up to 5 hours.
  • After surgery, Whitney will be in the hospital for several days as she recovers.  Theo will remain on a ventilator in the pediatric ICU for several days while his body is pumped with extra fluids (which his lungs may not be able to handle without the ventilator) in order to keep his new kidney happy.  After 5 days or so in the PICU, he will move to the main floor, where he will stay for another week or so.
  • Once Theo comes home, he will be on a lot of anti-rejection medications (which he'll remain on for as long as his new kidney functions) and we will have to be pretty antisocial for a couple of months he is quarantined to make sure his body has recovered and his medications are right.  This will mean 3x per week clinic and doctor visits for the first few months.  We'll give Theo a mask to wear to clinic visits.  Who wants to take the over/under on how long he'll keep the mask on??
We'd love your prayers as we prepare for the big day.   We continue to trust that God's plan is perfect.  Admittedly, though, the last couple of weeks have not been without stress for us.  Theo's earlier surgeries, which took place while he was in the NICU or shortly after he was discharged, were relatively easy for me to handle. I think that was because all that I knew as a new mom was life in the hospital.  Now that we know him as our son, and a boy full of personality and life, it's easier to get overwhelmed.  Not to mention, my older sister, one of the most selfless and generous (and FUN) people in the world, will also be undergoing surgery!  Please join us in praying for both of their surgeries and their recoveries, and for Theo's body to fall instantly and forever in love with Whitney's kidney.  Please pray for the doctors and nurses, and for peace and confidence in God's perfect plan for us.

Every night as we pray with Theo we thank God for giving him to us.  We are so lucky.  While he was not born healthy in every way, he was created perfectly in every way.  After yesterday's tragic events in Boston, where an 8-year old boy was killed while eating ice cream, spending time with his family, and celebrating the accomplishments of so many people, I'm reminded that we are not guaranteed health, success, or a long life.  I am reminded to cherish each and every moment with family, to love God, and to love people.  Thanks for being part of this adventure with us!


Theo and Whit zoom down the slide together

1 comment:

  1. Wiping away tears as I read this. Thanks for sharing. We will be praying for Whitney and Theo and your entire family!