Almost Home!!!

Well after a very long eventful stay here at CCHMC, we are proud to say that it is about over.  Plans for discharge are already in affect and it looks as if 10/20/2010 will be our date of discharge.  I have been working with Home Health to get things ready for Gabby's arrival home.  Today, mommy was trained on how to use a feed pump and this will allow Gabby to be fed continuously at night through her feed tube.  Her night time feed will begin at 5 pm and will go until 7 am.  She will be fed 45 ml (ounce and a half) every hour.  During the day she will be fed by her feed tube twice and each time she will be given 6 ounces.  I will still be able to try to feed Gabby by mouth and what she doesn't take by mouth will need to be given in her tube.  We are hoping that the tube placement will be temporary, around two to three months.  Gabby is able to still take foods by mouth, but she is refusing to eat.  The dietician wants her to be a more routine eater and that is another reason for the feed tube.  As many of you are aware, Gabby has always been the type to eat when she wants.  She will eat great some days and then will go several days where she doesn't eat well.  She has always gained weight but the dietician says she needs to have a more scheduled feeding habit.  I am still quite confused with the fact that the dietician says she is too chunky, yet they have her on a higher calorie formula and a higher daily intake then usual.  In my opinion, I think that would make her gain more weight. 

It has now been 24 hours since Gabby's surgery and she is still worn out.  Her doctor stated that we shouldn't be too concerned as she has been through a lot.  We are hoping that when she gets home and back in her familiar environment that things will begin to improve with her alertness.  I'm sure she will be excited to sleep in her own bed and back to her normal routine.