10/7 - Setbacks

I went in to feed Toby this morning and the circumference of his head had increased quite a bit since the day before.  Also, the fact that fluid was coming out of the incision threw up some red flags.  Dr. Nagy said he knew it was time to get rid of the fluid.  Toby had an external drain put in his head today.  He didn't put in a shunt yet because he is at risk to an infection because of the fluid that had been coming out at the incision site on his back.  So for now the drain allows the fluid to come out in a tube.  If he goes three days infection free Dr. Nagy will put in the permanent shunt.  It has been such a long and emotional day.  I fed Toby at 10am and then they would not allow him to eat because he was going into surgery.  They took him to surgery around 6pm.  That is 8 hours of an infant not eating.  I held him in my arms and he cried for 2 hours.  It was so hard and it felt abusive.  I was so relieved when he came out of his surgery and he immediately wanted off the ventilator.  He is so tough!  They have him sedated for now, but when he wakes up he can eat.  They will keep him pretty out of it for the next three days.  They want him to stay calm and quiet.  He can't turn his head over and lay on the side the drain is on.  This is a challenge with Toby since he loves to maneuver himself around his bed.  He turns his head side to side all day.  The nurses will really have to watch him.  It is a bit disturbing for their to be a tube in coming out of his head.  It is hard for us to see, and I can't imagine what it is like for him.  I am waiting for their call that he has woken up.  I will be so happy to know he has had something to eat.  I know we will have to do all of this again soon, but I also know it is part of what he needs.  Going home Friday is now a lost idea.  We will just start hoping for next Friday.  I won't lie it is so disappointing to not be going home.  This is our 16th day here, and I miss home.  Please pray that Toby does not already have an infection and that he won't get one.