Today started out good for the most part. I got a lot accomplished in my decluttering efforts which I was happy about. This afternoon was very stressful. I had gotten a message from the specialty pharmacy regarding setting up delivery for her next shipment of her new medicine so I returned the call. Medicaid will not allow it to be shipped until the 17th and I think I will have enough if not that will have to be addressed next week. While I was on the phone going through the supply list and what I needed or didn’t Nicole’s pump started alarming and displaying there was a blockage. I told the lady I was speaking to and when we had the shipment set up she transferred me to a nurse to help troubleshoot the problem. I put Nicole on the other phone but she couldn’t hold the phone and mess with her site so I had her put it on speaker and then we just used that.
Typical to Nicole… she knows everything and doesn’t listen… the nurse told her to disconnect the tubing from the site and what does she do but disconnect it from the site and from the pump. The pump end of the tubing is sterile. This meant we had to get another tubing which she then touched so we had to throw that one away also. The nurse decided the best course of action would be to change the tubing and restart the pump and see what happens but as soon as she reattached it the alarm started going off again so we had to change the pump using the same cartridge of medicine and just changing the tubing. The nurse walked Nicole through this and the new pump worked … thank God! I will be getting a new pump tomorrow via UPS as I must have two pumps at all times. I will be sending the old one back. If we have the same problem with this pump then we will have to do a site change as it will not be the pump. Dealing with the shipment and the pump issue took over an hour on the phone which ate away time to do other things but what can you do ?
I appreciated the fact that the nurse told Nicole how well she did with the process. Afterwards though is when she melted down and was upset about how much she hated her life and how many problems we have all because of her illness. She doesn’t want to have to change her site again after only two weeks and if this was going to be the norm she didn’t want to do it. I totally understand where she’s coming from but the only other alternative is the IV. I tried to encourage her and tell her I don’t care about the troubles as they are much, much better than the alternative which would be to lose her. She withdrew at that point and I asked her if she wanted to be alone and she said “yes” so I respected that. I did hear her crying though. This breaks my heart so much.
Of course Rick asked what would happen if she didn’t get the medicine in four hours (which is the shelf life) and I said I wasn’t sure but she would start feeling bad and could go into respiratory distress. I don’t think that would happen because we would be in the hospital before the four hours were up.
Earlier in the day I had a conversation with Nicole about college. I told her the college she wanted to go to required only a GED/High school diploma. For computer animation it is recommended that some traditional art classes be taken prior to enrollment something Nicole has never taken. Anyway, she said she wasn’t sure she wanted to do computer animation because she has never done it before. She also told me that she didn’t see the point in going to college because of the economy and the fact that she can’t work because of her illness which means it would be a waste of time. I told her that these were all excuses. Later, I asked her what she planned to do if she didn’t go to college and she really didn’t give me an answer for that.
I am so grateful that I was already on the phone with the specialty pharmacy and that so far everything is going well and so far no site change. I am also grateful that I got some decluttering accomplished.