My daughter, Natasha is 46 yrs old and has severe Cerebral Palsy. She got sick in May and we took her to Dartmouth General on 28th. They said she had pneumonia and started treating her. It was cleared up in a week but she started having other problems. The feeding tube going into her stomach started to leak so they decided to change the tube. It was a type available at the hospital but not the same as we normally use. We do have a spare for emergencies but they still wanted to use theirs.
Almost immediately she started having more problems. Her temp. fluctuated between 37+ to 39+. A red circle appeared around the tube entrance, getting larger and larger. They thought she had a virus and started giving her antibiotics. I was sitting with her one afternoon when they gave her a dose. The nurse left and within a short time my daughter started turning red, her face, her arms. I went and got a nurse. She disconnected the antibiotics and said she must be allergic to it. I'm wondering what would have happened if I had not been there. I don't think the nurse would have returned in the next hour.
We wanted them to replace the tube with our own but no one would do it. Said it was too difficult. She has a specialist in Halifax that always does this work but he would not come to Dartmouth General. Said he did not want to step on other doctors toes. There is no cooperation between hospitals.
Last Sat. her doctor was able to convince another surgeon to come and look at the tube. My son was there at the time. The doctor apologized and said that she should never have gone through all this shit. The red circle was a burn caused by stomach acid. He replaced the tube with ours and said it was so simple, he didn't know why they didn't do it. My son was watching and said it was so simple he could have done it himself. He told the nurses to put Malax on the burn. The red started to disappear, changing to brown like a suntan. Now, it is peeling like a suntan.
The temp went down but there is still a small leakage around the tube. Screwed it up with the hospital tube. We made a mutual agreement with the doctor to bring her home. Getting nowhere at the hospital. Now making an appointment with the doctor in Halifax. Took her home on Wed. She acted so so. When she woke up Thur. morning, she was all smiles. It wasn't a dream, she was really home.