Post Surgery Blues--Extended Stay in the Hospital :(

Raylee is really was and stopped eating and drinking completely. Yesterday we struggled with getting her to eat and it got worse and worse. We had thought she would be released on Monday because everything was going better than expected but that quickly changed. Yesterday morning she was fine ate Fruit Loops for breakfast and chocolate pudding, and even painted a cape with the local police department who had several officers and dispatchers there to paint pillow cases or capes with the patients. Then in the afternoon Raylee wouldn't eat or drink and was really angry and depressed. She eats like a bird normally but this was worse. She disliked all the medical staff telling them to leave her alone as she pushed them away and wouldn't look at anyone including me.

This morning she hid herself in her blanket cried when I opened the shades on the window and didn't want to do anything. When the nurses or I mentioned food or drinks she screamed 'no' and cried. This was really frustrating because the only thing she needs to do to go home is to eat and drink and she is refusing to do this. I felt like it was my fault because perhaps I was pressuring her too much or failed in some way because she seems mad at the world. She loves Lunchables and has fun eating them. Jerry stocked the patient fridge that's in the nurses station with Lunchables and Capri Suns because the hospital does not carry these items. Raylee didn't want anything to do with them which isn't like her. I have never seen her this way. I feel bad for trying to get her to eat because now that I think about it, I am sure her stomach is hurting especially with all pain meds, antibiotics, and bladder relaxing meds she is given....she is also on a laxative....poor baby girl. The last thing I want to think about when I don't feel good is food. The surgical team visited Raylee this morning and said she would be in the hospital at least a few more days because she isn't improving in eating and drinking. They come in the room around 6:30 to 7:00 am and it is difficult to grasp anything they say that early especially when your not getting more than 4 hours of sleep a night, and those 4 hours are not consecutive. At noon the surgeon filling in for Raylee's surgeon came to talk to me about giving her a NG tube or feeding tube for nasogastric feeding. He said she isn't getting the nutrients her body needs to heal and to wake up her tummy and intestines. I just cried. I felt so bad for her. The nurse had the oncology social worker who works with my family come and talk to me. She said sometimes when children are in he hospital they feel like they lost control of so many different things that they stop eating since it is one thing they can control. She said the feeding tubes take children time to get use to but it would help her get over this stumbling block in her recovery.

Raylee had to receive a medication prior to the placement of the feeding tube. This medication was a type of setative; it didn't put her to sleep but made it so she wouldn't remember the placement. They insert the tube up through the nose and down the throat to the stomach. Raylee screamed 'no' and cried during the placement and I had to hold her down. Her heartrate and oxygen levels were monitored closely for 1 hour to ensure there were no side effects from the setative or problems with the feeding tube. Once Raylee calmed down they began pumping the 'food' into her tummy. The food is basically an IV bag full of Ensure. Raylee fell asleep and the nurse told me I also needed to go get something to eat because I hadn't left the room all day. She basically lectured me on how I need to care for myself and eat too. So she said she would watch Raylee, however minutes after I left the room Raylee pulled the tube out of her nose. I shouldn't have left. A few hours later 3 nurses put it back in and held her down. It was a really bad day full of anger, frustration, and giving up on trying to convince Raylee to eat. It is possible we could go home with the feeding tube and feed Raylee through it. She can eat and drink through her mouth with the tube still inserted. Raylee's oncologist is convinced if Raylee were home, she would be comfortable and eat on her own and if she were her patient right now she would send her home, but she isn't her patient right now---she is surgery's patient. Anyway the postives things about having a feeding tube (we have to look at the good things in this to keep us going)are, Raylee is getting nutrients that her little body desperately needs. Like one of the nurses said she is probably a little malnutritioned. Honestly Raylee hasn't been able to eat since last Tuesday prior to surgery which was over a week ago. Another positive which we are thrilled about is all the oral medications Raylee is on, which is about 4 of them, can be inserted through the feeding tube and Raylee has no idea she is getting medications. This will give her a few days break without the fight and struggle of getting her to take oral medicatins. Especially since prior to giving the pain medicine she needs to eat something so her tummy isn't upset. She also gets a break from her parents and the medical staff trying to convince her to eat or drink something. Eating and drinking are just simple things, especially when that is the only thing from keeping us from going home right now; however for Raylee, eating and drinking seem to be extremely difficult and the last thing she wants to do.