June 15, 2012

Good Evening!

It is hard to believe it has been 17 days since we started this journey.  Nathan's surgery yesterday went very well.  It was a 2 hour procedure where they place a tube in Nathan's stomach that will empty into the stomach and the jejunum.  It is called a GJ tube...I am learning something new every day. The tube is about 8 inches long so it is a little cumbersome, but I am sure we will get used to it.  In three months they will change it to a little Mickey button that is very small and he can swim and go in the bath. So far, Nathan is tolerating it quite well.  Mom is the one who gets a little grossed out...what do you expect for a music teacher who still looks the other way and holds her breath for the flu shot. Those of you who know how big of a wimp I am with medical stuff would be very proud of me.

Everything else is healing well and we are getting ready to go home tomorrow orSaturday morning.  There is a lot to get used to and they want to make sure he is handling the feeds well before they send us home.  We are all excited to be in our own home and in our own beds.  The care we have received here has been amazing, but I will not miss them waking up Nathan every couple of hours all night long.  

Nathan is really back to himself laughing at our funny faces and talking up a storm.  You would never know he just had major brain surgery 9 days ago.  Each day he continues to fight this battle.  As we prepare to get discharged, we realize how much work Nathan still has to do, but I think we would all agree that he is up for the challenge. We pray that his wounds continue to heal without infection or swelling, he continues to develop physically, and his body tolerates his new way of eating.  Mike and I are ready to take our little guy home and help him heal. 

I don't think Mike and I realize everything that has happened to our family over the past two weeks. It will take time to process this all, but if there is one thing we do know is the unbelievable support system we have.  We know everyone is busy, but you have all taken time to let us know you are there and that is all we need.  Mike  and I have learned more in the past two weeks about life, parenting, and faith than most people learn in a lifetime.  For that, we are grateful.

Keep those prayers coming...now the hard work begins!

Much love,

Beth and Mike