Sunday, May 6, 2012

California Love... and then Surgery

First time meeting Anna! George, Carly, me, Anna, Hil and Theo
Life seems to be moving very fast these days.  It's hard to believe that it has been almost a full week since we were in California.  What a special trip for me!  Last weekend was the first time that my dad, my twin,  my younger sister, and my brothers-in-law had met Theo outside of the hospital.  I really enjoyed seeing them meet him as a little boy in the real world, and not just a patient.

Theo also met his California cousins for the first time.  He loved to snuggle with Anna (my beautiful, incredibly good 3-week old niece) and to watch George ("the Great," a very active two-year old).  We were able to capture all three on camera in what is one of the funniest, most awesome pictures I have ever seen.  (Seriously, it looks like Theo could body-slam Anna AND George.  What a chunk!)

Cousin love!

Not only did we get to spend a great weekend with family, we were able to introduce Theo to a bunch of wonderful friends who have been praying for him.  (Most of them have been a big part of my life from the time that I was young, since they watched my sisters and me grow up in our church.)  I have to admit that I was one proud mom showing off my little superhero.

Theo adores his Grandma!
I won't pretend that the travel was easy.  Theo was pretty well behaved, but he was sick most of the way across the country.  We left evidence of his presence in both airports and on the plane, and went through innumerable blankets and outfits.  But, the challenge of travel was worth it to get to spend the weekend with family.  I think Nick and I plan to hold off on any more air travel for a little while, though.

We arrived home on Tuesday night, and got back into our normal routine on Wednesday.  Then, on Thursday morning, Nick brought Theo into the hospital for a full day of dialysis prior to surgery on Friday morning.  They had a great day together, and Theo had a new nurse to flirt with for the day.

Theo with Dad after surgery
Surgery on Friday was a bigger deal than I was expecting, but it went pretty well.  (In order to protect Theo from mean middle school kids in the future, I won't go into detail about the purpose of the surgery.  I'll just say it was to correct one of the symptoms of his prune belly syndrome.)  The surgeon made two decent-sized incisions and two smaller incisions and spent almost two hours moving things around in Theo's abdomen.  Typically, the surgery is done as an outpatient procedure, but because of Theo's kidney failure, they wanted to keep him in the hospital until he is able to go back on his full volume of dialysis.
Perhaps because this is the first surgery that Theo has had since he was discharged, I am more aware of how surgery alters his mood and comfort.  It has been over two full days since the surgery was done, and it wasn't until late this afternoon that I started to see glimpses of our happy, smiley, wiggly boy.   I'm so glad to see him smile again!  Over the last two days, though, I have become very thankful for two things: 1) pain medications, and 2) nurses who are skilled at sticking babies for lab work.  (You wouldn't believe how many times our little Theo has to get stuck for lab work. He is not a "giver" when it comes to giving blood.)

This afternoon, the nephrologists decided to start dialysis again, but are going slow on the volume.  We are watching closely for leaks out of any of the incisions, as well as for signs of any infection.  So far, dialysis seems to be going well.  But, we are already seeing some of the less-than-stellar side effects of dialysis: increased vomiting, discomfort, loss of appetite.  Theo seemed to slip back into a state of slight pain when we started dialysis, so we gave him another dose of tylenol with codeine.  (Hopefully that is the last dose that he will need!)

Welcome back, happy Theo!
If all continues to go well, we will increase fill volume to his full prescription by tomorrow or Tuesday.  Once he is up to his full volume, we will be able to go home again.

Nick and I are ready to be back to our normal routine, but I think we are both glad that we are getting this surgery out of the way now.  We've taken advantage of Theo's hospital stay, too, by going out to dinner together after Theo has fallen asleep for the night.  Then, one of us is able to spend the night with Theo, which is a nice change from the NICU.

I am so proud of Theo.  He is such a champ, as my grandparents say.  Although he is clearly not comfortable, and has been subjected to way too many attempts to draw blood for lab work, he is a pretty pleasant patient.  I think he made another nurse fall in love with him on Thursday.  This boy is already a heart breaker.

I feel really lucky to have so many people praying for Theo, and thinking of us.  We feel like Theo is not just "ours," but in a sense, he is all of yours, too.  I know that sounds crazy and weird, but it is true.  We also feel incredibly fortunate that, while Theo will have challenges down the road, we are dealing with a chronic illness that won't necessarily prevent Theo from living a normal life.  There are so many families that are dealing with so much more heartache, and my prayers go out for them.

Have a wonderful week!  Here are a couple more pictures from our California trip:

Grandpa with his grandsons at the park

Cool Aunt Whit with Super Theo

Some of my best friends from high school.  Look at all of those kids!

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