Hello to ALL! If I knew what today would bring I probably would have crawled back in bed ;) We decided before she took her nap that I would replace her g-tube button. We have been using the same tube for 6 months. I thought since she hates changing it I wouldn’t upset her until it broke and we had to BUT then I got nervous since we are leaving on vacation Friday. So I decided today was the day. I pulled the old one out and did what I always do…put the new one right back in. For the life of me I couldn't get it in. Her stomach hole had shifted. She has grown so tall in the last year. I called her nurse practitioner and he wanted us to come right up. My gut instinct was that this was Ava’s bodies way of letting us know that it was time to let it go. She did this with the central line as well. If you remember two months after her last surgery in June 09 she developed a very high fever. We assumed it was her line. We tested it and she was put on antibiotics. They decided they didn’t want to take the risk so they took her to surgery to remove the central line since she was doing so well without it. There was NEVER an infection that was found in her line BUT I believe with all my heart it was Ava’s way of saying, “We need this no longer so goodbye Central line! I called Brian at work and he thought we should try to save it. We had been informed by the NP that putting in another line later would be no easy task. She would have to have surgery. I debated this with myself long and hard. (A big whopping 5 minutes!)We took her to the hospital and her NP worked on it for an hour and a half and couldn't get it in. She was SO good. He used metal rods to try and make the hole bigger but nothing worked. Her doctor thought at her visit last week that she'd be fine without it. She was so patient and about four times she cried and made pretty horrible faces.
(This is our awesome NP Josh Peterson. He really tried his hardest to get her tube in .. her body had other plans. We can feel his love and care for Ava.)
We knew it hurt but she was relaxing so he could do what he had to do. I decided that enough was enough and obviously this was a sign. I can't wrap my brain around it...no getting up at night to a beeping machine. I'll hook her up to her O2 monitor for a few nights just to be sure all is okay. This poor little girl...yet she was SO brave. I'm telling you right now I wouldn't have done as good as she did.
The hole should close on it’s own. In fact it was already starting to close as little as 2 hours from when I pulled the old one out. She has a bandage over it for now but I expect knowing her healing capabilities it will be closed in 24 hours all on it’s own.
I am in AWE of her courage. I feel like a broken record but it is so true she is such a strong little girl. She was given to me to teach me patience, love, understanding and God’s true Grace.
So I ask of each one of you… Ava needs to maintain her weight but better yet she needs to gain. I will do everything in my power. She needs her prayer warriors once again. We need Ava to stay healthy and strong AND gain weight without her tube. I’m rightfully nervous as in 9 months she hasn’t gained anything and we’ve been doing nightly feeds. She will be lacking about 2500 calories a week. I know this is something Ava CAN do! Thanks for your love, prayers and support. God IS good!
Here is a picture I took of her and I a few days ago.