Thursday, February 21, 2013

On the list!

As of Monday, Theo is on the kidney transplant waiting list.  Wooohoooo!!  He is listed as inactive, which means that we will not be receiving a call in the middle of the night saying that a kidney has been found for him.  Instead, he will just accrue time on the list while all of his potential living donors are tested.  In the event that we don't find a good living donor match, he can be activated on the list at anytime.  Still, getting to this point feels like a huge milestone for us.

Exactly one year ago, Nick and I spent the night in the hospital to prove to the discharge team that we were comfortable and capable of performing all of Theo's medical duties.  The next day, we were able to bring Theo home for the first time.  Looking back, our time in the NICU flew by.  Yet at the time, it felt like it was never ending.   (And now I think about how long ago it was that we celebrated Theo's first birthday, and it feels like that was ages ago!  I think the lesson learned is this: Time is very precious, and it will pass quickly.  Take advantage.)  Never did we imagine that one year after discharge Theo would be approved for transplant.  

So what's next? Well, a few amazing family members and a couple of incredible friends have submitted donor packets to the transplant center.  The transplant center is now in the process of evaluating each donor (starting first with Theo's blood relatives.)  So far, a couple of donors have had initial blood work done, and have had their blood samples tested against Theo's.  Over the next couple of weeks, there will be a few additional tests.  If all goes well with those tests, we will fly out a potential donor for two more days of testing at the hospital here in Charlotte.  If the donor is deemed a good candidate (meaning they are determined to be healthy enough to never need a kidney transplant of their own and they are a good match for Theo), a surgery date will be scheduled.  From what I've been told, surgery could be as soon as April.  (I know.  Crazy.)

Cool new custom braces!
I can't believe we are to this point.  Please pray for the process, for all of the potential donors, and for Theo.  I'm feeling mostly excitement at this stage, but also a little apprehension about the surgery, the recovery, and the new challenges Theo will face post-transplant.  But, I know that having a functioning kidney will results in a major lifestyle improvement for him (and probably for us).  There are a few things that I am really looking forward to post-transplant.  I am so excited to give him his first real bath.  I know Nick can't wait to take him swimming.   I can't wait to see him hungry.  I'll be glad when he has one less tube to pull on in his stomach.  I'll love not hooking him up to a machine every night.  I certainly won't miss shots, either, for that matter.  There is a lot to be excited about!

Theo is such a gem right now.  His personality is HUGE.  He laughs all the time.  He is "furniture cruising" with great speed.  He gets into EVERYTHING.  He loves to dance, sing, and drum (especially on our mixing bowls).  When he is tired, you'll know it.  He has even started saying "Night Night" when he is ready to be plugged in.  Seriously.

He's also started growing again.  I have a feeling that if his current weight gain keeps up, he'll climb above the 5th percentile at our next clinic visit.  We're still working on getting him to eat by mouth, as opposed to feeding everything through his g-tube, but we are encouraged by the fact that eating typically improves pretty dramatically post-transplant.  (See, so much to look forward to!)

Night night!
Just wanted to share the good news with all of you!  :)  We will keep you all posted as we get closer to finding the right donor.  In the meantime, we really are humbled by how many of you have kept Theo in your prayers and thoughts.  Thank you.
Ok, one funny picture to share (and please don't think that I am cruel.)  If you've never taken your child for a chest x-ray, then you won't be familiar with this contraption.  Theo was in it for about 5 minutes. For the first 4 minutes, he licked the plastic and smiled. (They assured me it was clean, but said that they wished he would cry because they could get a better x-ray.)  After the x-rays were taken, Nick pulled out the camera.  Theo decided to turn on the water works so that everyone would feel sorry for him.  Don't buy it.  Such a stinker.  We love him!!

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