Stopping the TPN

We have decided that we are going to stop the TPN (IV nutrition) a week early. Oliver seems to be having more complications, pain, and fluid overload from this than anything. We gave it in the hopes that we would get a few decent weeks and then try to start food again but he has just been very unhappy. We will start very slow with about 5 ml's of Pedialyte an hour which is like having a tiny sip. If he does ok we will try to go up. If not we will pull back and make Oliver as comfortable as possible. We are terrified. I really really hope this works. Pray for the tummy! Oliver really needs a haircut as well, he is growing a mullet. Hospice found a volunteer that will come to the house. We are super excited to have a new big boy hair cut. Adina went to school today which was huge for her. It has been helpful to have a lot of people come see Oliver because she gets attention too. If you want to come and visit please don't be afraid to call. If we can't do it we will be honest. If anybody has been sick we just ask that you wait a few days. We will keep you posted about Oli's tummy. This will be a very nerve wracking few days to come. We are at the point where we don't even know how to pray. We pray for Oliver to stay with us but we also pray that he doesn't struggle and suffer anymore. So I guess I don't know where that leaves us. Oli again has had an increase in the Morphine and Ativan and continues to daily need more to even touch the pain. Thanks again for all of the love, support, food, and prayers! I know that I usually post pictures with my posts. Oliver still looks like our beautiful little angelic stud muffin but he also looks like he is in pain and that is not how we want people to see him. I will repost our favorite and the way we want you to think of Oli. This was Christmas Eve right after the organ stopped. Oli had been singing loudly with the music and decided to have a lovely solo at the end! Go Oli! (This was pre-trach when he could yell!)