Care Conference

Oli's conference went well. Met with the Hospice team and then doctors put in their thoughts. We will go home tomorrow. Would have been today but because Oliver is recieving his nutrition through his central line (new port they placed) they have to check electrolytes. So tomorrow after labs have been drawn and checked we are outta here. He will have to get labs at home too but the hospice team will come to the house, draw them, and take them away. We don't have to leave the house! We tried to feed Oli last night and it didn't work. Our plan is we are going to give Oliver a two week tummy rest. He will get his nutrition from an IV form or food. Fluids, electrolytes, vitamins... After two weeks we will very slowly try to reintroduce food into his tummy. If he cannot tolerate food we have made the decision to feed to comfort. This means as explained by our Palliative care doctor, when he seems like his mouth is dry we give him a little water or pedialyte. He does not feel like he is starving because his body has starting turning off that feeding center that controls hunger and thirst. This could be why his tummy is not working anymore. I asked him what he felt the liklihood is that his tummy will start to funtion again. He said he feels that it is not likely, less that 50 percent. I hope he is wrong and he hopes he is wrong, but I needed to ask that question. I know many people think that we can't "give up", "doctors are always wrong", etc. I know this, and we are not giving up. We are preparing and hope to God we are all wrong. The reason that we do not keep him on the TPN (feeding through his veins), is that it comes with great risks itself. Kids that are on this longterm get many painful infections and are in the hospital a lot. Long term use of this eventually leads to liver failure. So we could vent him and breathe for him, feed him in a not always so safe way, and give him lots more time. This would be lots more time in the hospital feeling very sick and highly medication. Or, we could keep him comfortable and have him home and give him good quality of life. Trying to do the "right" thing is hard. Watching your child suffer in anyway is hard.
Adina is doing okay, she is working with child life at Gillette and will be every week for a while. I don't really know how to explain this to Adina. I am going to go to the Center for Grief, Loss, and Transition soon to get help for us all. John and I are perhaps collected on the outside, at least John is. The emotions of it all hit at night when all is quiet and your brain won't turn off. I hate this. I pray every night that Oli is going to pop out of this. I also don't want him in pain. Thank you everyone for the love, letters, and personal prayers. They help us all get through the day.