I have been really struggling with getting this whole process together. I get very nervous every time the nurse comes. The last two pump changes (which happen every three days) there has been a problem with the pump when it comes to filling the tubing that runs from the pump to Nicole’s catheter at the site. I thought I was screwing something up.
The nurse today figured out what we were doing wrong which is we weren’t putting the cap on prior to hooking up the tubing so the pump was reading that as the cartridge (this holds the medicine) had been removed. Once we put the cap on first that cured the problem.
The nurse said that she thought I knew what to do but I didn’t have the confidence that I did know what to do. I agree somewhat but there are so many steps with at least 30 and sometimes the language is more complicated than it should be. I did video-tape the training as well as audio-recorded it on my Ipad so I am going to listen to both and finish a cheat sheet.
Nicole has woke up two mornings in a row freezing because she is sweating in her sleep. She has one pair of long pj bottoms with pockets that she can put her pump in but she wanted me to wash them so she has a turtle pillow that has a bandana around the neck that she clips the pump too when she’s sleeping so she is using this until the pants are washed and dried. A little bit ago the pump came unclipped and the tubing unattached itself from the pump. She freaked out and I told her to text the nurse which she did. The nurse told her if it didn’t touch anything to wipe with alcohol and plug back in. I kind of got a little frustrated with her as I left the room and came back and she had taken the tubing off again so she got mad at me. I made a comment that I shouldn’t have and now her anxiety level is really high. Somewhere during this whole thing she pulled the line which has resulted in some site pain. Her anxieties are high because she’s afraid alcohol got in the medicine and that she will get an infection so she is freaking herself out. I can’t help her when she gets like this because she won’t listen and I get frustrated. She is also suffering from nausea which she has medication for since this is a side effect but she also has sinus drainage which can also cause her to have nausea. She also has some diarrhea but I’m not sure it is from the medication but it is a side effect and we have OTC stuff for that. What really sucks is that the dose of medication is getting high enough now that she going to start having side effects and since we increase every three days she will not have much down time without them.
I need to learn to keep my mouth shut and not be so impatient with her. She takes everything way farther than she should. I don’t like to see her with so much anxiety and I especially don’t like the fact that I can’t make it better.