Pump Change
Aug 6 2012 in Jane's Blog by Jane
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.
Trish said on August 6, 2012
Jane, It sounds like this new treatment is stressful all around. That is to be expected so don’t be too hard on yourself and tell Nicole not to be too hard on herself. It’s terrific you and the nurse figured out the error with the tubing! You’ve done this a few times now so things will start to be easier. Plus, repetition is how you build confidence. I’m sorry Nicole is having a few side effects but hopefully, her body will get used to the meds and the side effects will level off. It’s a tough, slow process but you guys are doing great!
Give each other a big hug! Tomorrow is a new day so let this one go.
Meryl said on August 6, 2012
Jane, you are doing the best you can and as Trish said, don’t be so hard on yourself. I know it’s easier said than done. It’s not an easy process for either one of you and emotions will flair at times. I hope the side effects subside soon and that Nicole feels better.
((hugs)) to both of you
ejourneys said on August 6, 2012
I agree with Trish. You and Nicole are both doing great, especially with all the high anxiety. I love your use of videotape and audiotape to learn the techniques, and I love that you are working actively to build your self-confidence.
You and Nicole will get through this. You are getting through this.
You are both dealing with what my partner and I call “cars on the road.” The new equipment is one car; all the new instructions are more cars. The glitches and uncertainties are yet more cars. Nicole’s night sweats, freezes, pain, diarrhea, and nausea are yet more cars. The emotional fallout creates even more cars.
Mario Andretti can’t hold a candle to either of you. Neither can Danica Patrick.
You are both dealing with a LOT and the stakes are high. And like racecar drivers, you are dealing with it all, both of you, one second at a time. It is blasted tough and not pretty, but you are dealing with all those cars on the road. It’s just a hard, hard road.
Keep breathing. Keep hugging. (((Hugs)))
kristin said on August 6, 2012
Jane, I second (or third) what’s been said above, and just want you to know I am thinking about you and Nicole and hope this whole process becomes easier for the two of you. Please don’t beat yourself up for getting testy in what is a situation fraught with anxiety.
Hugs and blessings to you and Nicole.
Bette said on August 6, 2012
Hi Jane,
You are both doing just great. As you work out the challenges, you become stronger in the day to day handling of the pump.
It is very frustrating not to be able to help someone we love in all areas. You are helping Nicole daily in all that you achieve together.
Thinking of you both and knowing each day you’ll feel more and more confident.
G-J said on August 7, 2012
Jane,
Both of you are scared, nervous, and struggling with this. Be kind and gentle with each other and try to build in some rewards for your daily successes which you need to realize you have. I know what you’ll think when I say this, but involve your husband. He should also know how to do this.
Denise said on August 8, 2012
Hi Jane–All these changes! It’s so hard to keep patient and positive. One moment at a time, with the last moment kept neatly in the past.
Jane, you’ve overcome so much. It’s hard to believe you can find your groove with this, but you will. I know. it.