Wednesday, January 12, 2011

A long time coming

          I feel like so far, I only blog when there is something CF related going on.  I HOPE that in the future, that changes but for now, another Logan update. 
          We had clinic yesterday and the results were not good.  Well, I shouldn't say it was ALL bad.  His lungs sound clear and there were no concerns pulm-wise.  He's been on oral antibiotics for about a week now because of a cough that stuck, but that is now improving and it does not sound like there is any fluid in his lungs (praise the Lord).  I think the CF team all knew what was coming for Logan, and I think they all knew how I would react because they really didn't talk to us much about Pulm stuff yesterday.  The Pulmonologist came in and listened to him and asked if his cough was getting better and then he peaced out.  Not the norm for him.  GI docs, Nutritionist, and Case Worker came next.  Pretty much as soon as they sat down I knew what they were going to say.  We all were aware that Logan has been headed in the direction of some sort of supplemental nutrition.  After hearing for so long that this was a high probability, I don't know why I wasn't mentally prepared for it, but I sure wasn't.  I broke down.  I don't want my baby under anesthesia twice!  I don't want him to have tubes hooked up to him all night while he's sleeping just to supplement his calories!  I don't want my child to grow up hating food and me for forcing it on him!  There are SO many things that are good about the G tube and the direction we are headed... but I am terrified!  What did Logan do to deserve this???   I am an excellent worrier and I am doing a great job of overanalyzing all of this and causing myself to be sick with worry.   But worry as I may, it's happening anyway.
          So, next week he will go in for a set of Barium Radiographs to make sure all of his organs and colon, etc. are in the correct position and that nothing is enlarged.  Then sometime the first couple of days of February he will be in the hospital for about 4 days for the first of 2 anesthesias.  The procedure should only take about 30 minutes (under actual anesthesia) and then 8 weeks of healing.  After the incision is healed, about 8 weeks post Sx, they anesthesize him again and pull the original tube out and measure the size of the incision.  Then they are able to order a smaller, less obstructive, port that fits Logan's tummy exactly and my guess is we will probably use it for 1-2 years.   Unfortunately, that puts the second surgery right around his first birthday.  :*(   What a bulls*&! birthday present!!!!!!!!
          Well, that's all I got.  I was going to apologize for unloading, but you are viewing this blog voluntarily, so it's kind of your own fault that you read it ;)