Today has been a rough one. Skyler's feeding tube was accidentally pulled out so we had to go down to get a new one. They have to place it under an xray machine because they place it right into his intestine so they have to be able to see if its going in the right spot. He HATES doing this and screamed bloody murder the whole time, but did everything we asked him to anyway. He has to swallow when its going down his nose or else it will just come out of his mouth and he did great when we asked him to even though he was crying. Thats one thing that I have been so proud of him for. Even though he hates everything that they are doing, he always does it. Then when we got back up to the room, wound team was waiting for us to put a wound vac on his pressure sore. Its like a little vacuum that they put on his wound after packing it with spongy stuff. It has a tube that comes out of it and attaches to a little machine. Its supposed to pull it together more so it will heal faster, but it is a pain in the you know what! I hate that he has to have it on. I still have a lot of anger built up over the whole pressure sore thing because it was so preventable. The wound vac is pretty painful for him because every five minutes it starts suctioning, so he has had a couple big doses of Morphine already today and also some Zofran and Ativan for nausea. He got chemo tonight and has been throwing up like crazy. Poor little guy has just had a miserable day.
These past couple weeks I have started experiencing anxiety like I have never experienced before. I am just so worried about him getting sick again that I have become a total germaphobe. Im constantly sanitizing his room and making sure the staff is doing everything to keep the germs out. Im sure the nurses are starting to get so sick of me. The docs too. Yesterday I asked the anesthesiologist to put a mask on and he looked at me like I was crazy. I dont think he was used to having a mom tell him to do something like that. I have just had to learn to not worry about what people are thinking of me and just do what I think is best for my son. When I get weird looks I just think to myself they probably havent experienced having a doctor tell them to say goodbye to their son because he probably wont make it through the night. They probably havent experienced holding their sons hand and thinking I only have hours left to feel this warm hand before it is taken away, or thinking that they will never get to see their sons eyes again or hear him talk or laugh or smile again. Well I have. I cant even put into words how incredibly painful that night was for me, that was a low that I NEVER want to experience again and it was all because of an infection. So I cant feel bad about being "overly protective" It just seems though that the better he gets the more anxiety I get. I just want to put him in a little bubble and keep him in there until this is all over, but I know thats not reality and its hard to know that he may get sick again.