Last week was not the best of weeks. Carly is getting really depressed about being so sick and having to do all these medical things to stay alive. I am getting frustrated because I am not able to help my daughter and not being home, I am not able to work my business the way I want to. That being all said, the end or is it the beginning of the next week, was the final bit of weirdness I could tolerate!
Since Saturday was a day off for both of us, we did manage to go shop at Dollar Tree for a little while, just to get out of the house. Carly loves to shop and she adores a bargain, so Dollar Tree is right up her alley! She loves to play with all the cheesy items they sell.
She even was able to go out to dinner with her friends to help Chad celebrate his birthday and she got all dolled up and looked beautiful!
So all last week we do dialysis just like we are supposed to do. I’m getting really good at cannulation and she is getting really good at helping me get her all set up. On Friday, we ran out of both the PAK and the SAK. The PAK takes about 2.5 hours to complete getting it ready and the SAK takes 7.5 hours to get it ready. Carly, of course, waited until late Saturday to get started (Sat. is an off day for dialysis) and we had all kinds of problems!!
First the PureFlow unit would not recognized the PAK no matter what we did. We had never replaced the PAK before so we were following the written instructions in the manual. We finally had to call NextStage to help. Come to find out that the PAK was defective. Go figure. We had to pull it out and get another one out. Now these things are large black boxes that weigh about 15-20 pounds each. You have to pull the old one out and unhook it then slide the new one in and reconnect it. The problem is that some of the connections require the PAK to be partially out of the unit. Once we got the second one installed, we were a go.
Carly complained that the PureFlow unit alarmed all night long after she put in the new SAK, keeping her awake most of the night. Now, I started to feel bad for her lack of sleep until I remembered that she waited until late to even get started. She is such a procrastinator!! Anyway, she was gripey and I was frustrated when we started treatment on Sunday.
Our usual routine on Sunday is to get up early and get her on the machine so she will be done in the morning and I can leave and drive back to Tulsa and still have some of the day there. Unfortunately, this Sunday was not to be that easy! We got her all hooked up and running without many problems, but then the machine alarmed and alarmed and we could not fix the problem. We finally ended up doing an emergency rinse-back of the blood in the lines and just disconnected her because we were both FINISHED. The problem was that she had no dialysis Saturday and now no dialysis Sunday and she had to get dialysis on Monday, but I would be in Tulsa.
Monday morning, she called the Home Dialysis Center and they had her come up and get her treatment there. She was so miserable and felt so bad! When I talked to her on FaceTime, her little face was round with extra fluid! They were able to let her run for 3 hours and pulled off 3 kilos of fluid.
Today is Tuesday, I drove back from Tulsa and we got her on the machine right away. Hopefully, she will get back down to dry weight and feel better too!
Any one interested in reading her blog can find it at BeautyinHardship.wordpress.com. I warn you, she is very direct and her language may offend, but she is genuine in her feelings.