Things have been a little crazy around here and I haven't gotten a chance to update. We got home on Monday from the hospital.
Tuesday we went and got some blood work done for Wysdom and he got his H1N1 shot. I must say that it was pretty uneventful. We were able to take him into the clinic and get it done right away.He didn't have any fever or reactions and we are so thankful for that. The clinic treats children with high needs so there was no line or chaos. When we got home on Tuesday we had a home care nurse come and visit us and order some supplies for us. She thought that the g tube site looked a little gunky or full of leakage and pus. Yup it didn't look to good. I have never seen one before in person, but I felt that it looked a little painful. Wysdom would scream his head off every time we cleaned it. Oh how my heart hurt this week just hearing him in so much pain. My stomach would start to knot at the thought of cleaning it and I was worried if I was doing it right. So I was very happy to have the nurses opinion.
So Wednesday we continued to clean the wound as best as we could. It was very difficult to clean as the g tube was so tight against the skin. We were given all these instructions to clean underneath the tube and rotate the bar,but we were having a hard time. Later in the the day we had our feeding team come in to weigh Wysdom and to see how he is doing. His weight is 19 pounds and he actually gained some through the week in the hospital. He has started to babble more, respond to more noises and open his mouth for food. Ah what a great site that is. It's so encouraging to see now that the ng is out.
Thursday our nurse came back to see how the g tube wound was doing and she thought that something was not right. She thought that it was still to tight and wanted us to go back to the hospital for them to check it out. That's right! Can you believe it. So we called and got an appointment for Friday morning. She was also concerned with how much pain Wysdom was in when she went near the tube. I was also alarmed and emotionally drained from all of the pain he was in and screaming he was doing.
Today(Friday) we headed back to the HOSPITAL. The nurse and the surgeon decided that the tube was to tight. Unfortunately since it has been so tight we have not been able to clean under the t bar and the bad news is that the pressure of it cut his wound open more.!!!!!!!!!!!!! So now there is a tear. Oh my poor little man. The surgeon says that this can happen and that now we just have to wait to see if it will heal. So we headed home a little disappointed that this happened. Blyss can literally not take her brother screaming anymore and has to be removed from the area while his dressing gets change. We tried to do this at the start but both my husband and I were working on Wysdom together. The good news in all of this is that his eating and babbling seem to be thriving in the absence of the ng. As well for the first time tonight he didn't freak out and scream when we cleaned the g tube. So that was encouraging and such a relief to me.
Sorry for the long blog. All I can say that it is sure hard sometimes to be a mom to a medically fragile child. It's not that you don't love them, because I love him more everyday. It's just that I hate seeing him in pain. So I am praying that he has better days ahead. Boy Wysdom, you are one tough boy.