This may possibly be the most difficult post I will ever write. I am writing to you from Crouse Hospital where my 16 year old daughter is lying in a bed next to me hooked up to meds through a PIC line. She can no longer eat or drink for 2 months and will receive all of her nutrition through TPN (Total Parenteal Nutrition) She is also being started on Remicade tonight to get her colon as healthy as possible to remove. Yes, I said remove. She is going to have surgery in 2 months to take out her colon and she will have a temporary colostomy/iliostomy. They will take her small intestine and make a pouch and once that learns how to act like a colon, they will go in and put that in and she should be able to live a normal life.
Katie is sick. When the surgeon was here, school called to say she had a fever. She was seen at the MD today and it's just a cold. SO, now we have to worry about cross contamination. Plus the poor child's world is un an uproar with only one of us being there at night. Cheryl and I are taking turns being with Gillian at the hospital.
I can't write anymore. I am so tired.