It seems like more than ever, but I need wisdom from the Lord himself about what to do with Miles. He can't seem to keep any liquid down. He's not sick. It's just that his body is rejecting liquids. His food comes back up too, but not as bad unless we give him something to drink with his food. He looks pale. We're watching him for dehydration, but he seems fine for now. I just don't know what to do. We're trying so many things right now to get liquids down him but nothing seems to be working. I think he threw up at least 20 times yesterday. He doesn't really throw up, he doesn't spit up, his body just rejects it. He will be sitting calmly and all his food and drink will flow out of his mouth in huge amounts at a time.
His physical therapist came over today and she has been like me from the very beginning about the G-Button/Feeding Tube. (See yelling and throwing things post if you don't know what I'm talking about.) She didn't want that for Miles at all, but today she told me that she has changed her mind. She now thinks he needs it. She thinks he needs it for growth, strength and for erroding esophagas reasons. She told me that she did not want the Feeding Tube to replace food. She said that we will continue to feed him foods by mouth, but the button would be great for liquids and medicines. The great thing about giving him his medicines through the button is that he will get every drop. He won't spit it out and not get it all. That would help with seizures and surely his body tone. I'm not in any way saying that I'm on board with this decision. I'm just saying that there are benifits to this thing.
My back has been so tense the last week as watch his food come out of him over and over and over. I feel like everyday I'm getting backed up into a corner closer to him getting that Feeding Tube. I'm trying so many things to try to figure out how he will keep food down, but so far I've just spent a lot of money without any good results.
I've determined in my heart that I'm going to hold off talking to the doctor until December 27th. I have an appointment with Miles' pediatrican to discuss all the things that are going on with Miles. Dr. Wiley called me out of the blue about a week ago and said that he wanted to make a time to sit down with me for an unlimited time and hear my heart about what to do with Miles. Can you believe that? Dr. Wiley is so awesome! He wants us to sit down and make a plan for what to do with Miles. With this in mind I want to just do what I can until that appointment to try to fix this rejecting food problem, but if he still is having trouble by the 27th I'm thinking that we will be discussing the Feeding Tube on the 27th.
So as I said at the beginning of this...I need the Lord's wisdom about what to do. He's the only one that I have confidence in.
I will say this though...My lovely friend Rachel sent me flowers today and it made me happy. They weren't roses. They weren't daisies. They were scrapbook flowers! How sweet is that? The Lord gave me great friends!