Well it has been a very emotionally and draining week. First off, I would like to thank everyone for your thoughtful comments, phone calls, and private e-mails. It has given me a lot of hope that yes, I can pull through this for the sake of my three boys.
Carson is trying to get used to the NG tube but we have pulled it out a few times. It usually happens when I take his rolled up tape off to replace with new. He is so scared every time I go near the tube and he is now walking around with a blanket and places it in front of his face. I feel really bad because when he pulls it out and I have to replace it, he will start screaming mommy I love you , please stop. I usually end up crying with him before it is done. I'm really trying to stay strong for the both of us. Coltan and Cody have been great. Cody has actually asked me to teach him the feeding part and I usually let him do all of the steps (supervised by me) and then when he is finished, you take 5mls of water to wash out the tube and he will do the last step as well. I cannot believe how grown up those two are. They have really stepped up to the plate and I'm just not sure when they grew up........I have missed it.
Last Friday we had a really good time. The boys got to go to their soccer coaches house and we had a party and they received trophies for the fall league. Coltan plays on two teams with this coach and Cody plays on one. The two teams are on different levels and they both finished first. It was actually pretty crazy, there were 81 people all in one house. But it turned out really great. One thing that really touched me is Brad and Kenda are also the ones that introduced me to their church. Before everyone ate, he said a extremely nice prayer and it was all about Carson and getting him better. Everyone there was so loving and since they hadn't seen me in the last 5 weeks, made sure we were all okay and everyone offered anything they could to help us out. It is such a great group of parents.
Saturday the boys went to their dad's and I hung out with Carson. Now for the million dollar question???? Carson pulled out his NG tube and I was all alone. As I was trying to put it back in, he was crying for his father. I finally decided that it may be easier to put Charlie on speaker while I attempted to replace it. One reason, to comfort Carson, another, so he can hear what I have gone through for the last few days. Everyday I would get even more bitter and angry over this whole situation. I couldn't reach him so fair game, I called his "girlfriend". She heard what I was going through and wouldn't you know it, got Charlie on the first try. I did have a small conversation with her and explained how I felt about her coming in between my son and his father. I feel she and I have come to an understanding and as long as my son is first, she doesn't need to worry about me. I told her that if she can't handle Charlie at my house, move on. So Charlie did show up at my house Saturday night. It was perfect, Carson's NG tube wasn't in his stomach and it took him, my niece, and I with the guidance of the home health nurse to place it. I think Charlie "got it". He has since come over Monday, Tuesday, and will be back down tonight. I'm not okay with his behavior, but we are figuring it all out. I have a 100% commitment that he is going to help me with Carson and his son will be #1. I explained to him that that the doctor said Carson HAS to have stability in his life right now. So I told Charlie he is either a full time father or he can stay away until this is completely resolved. He states he is in it for the long haul and Carson will trump anything else in his life. The doctor told me that she doesn't want Carson in different environments. She wants him to stay in my house as much as possible. She told me that even going to a restaurant right now is a very bad idea. She wants no distractions when we are trying to feed him.
Our goal is to feed him foods first, then try to get him to drink either 6oz of Pedisure or milk. If he doesn't drink it or not all of it, I will put the remaining amount through his tube to total 6 oz. We do have one feeding in the middle of the night so I have been getting up every night to feed him. It is usually between 2 and 3AM and Charlie has stayed without me saying a work. I have no idea what the future holds for him and I but I think something clicked and I can see in his face that he is very worried about Carson. We actually were on the computer tonight looking at other possible problems that are causing all of this. He even took the computer away and continued his own research. We are out of suggestions.
So long story short, we have 3 doctor appointments today and I'm on my way out. Please send prayers our way so that they don't admit him today. Today is the deadline for getting some sort of improvement.
I will update you later, if we stay in the hospital, I will probably call Shari and ask her to post for you.
Hilton Fallsview Hotel, Niagara Falls, ON
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