On Tuesday, July 24th we had the pharmacy nurse and the local home health nurse come to our house to begin training for the new subcutaneous drug that Nicole is starting in hopes that this will improve her quality of life as the inhaled medication isn’t doing the job anymore. The process is very complicated as opposed to the inhaled medication. There are a lot more steps and things must be kept sterile.
On Wednesday, we went to the doctor’s office with the medication and all of the supplies that I had received that morning to do the training again as this time it is for real. I put two videos on Facebook of Nicole inserting the catheter and getting started on the medication. In subcutaneous (subq) the medicine is administered through a small catheter that is attached to her abdomen in which a pump keeps medicine flowing into her body. The pump cannot be turned off for any reason unless the pharmacist or Nicole’s doctor tells us to. In case of a malfunction or an emergency we would usually have enough time to get to the hospital that her doctor works out of. Before the pump was started Nicole did a six-minute walk test which was worse than in February and her oxygen saturation levels got down to 74 at one point. This is a test that doctors use to track how well the treatment is going as well as judging how the disease is or isn’t progressing.
On Thursday, Nicole did very well except for having a hard time walking as she was getting use to a catheter as well as tape being on her belly and adjusting to a new way of life with making sure both the pump and the site is kept dry at all times especially in the shower. She can’t go swimming anymore without a special suit called a dry suit which protects both the site and the pump. We had to go get blood work as the doctor wanted her to have a BNP test that measures the heart function. She also had her monthly CBC (complete blood count) liver function and pregnancy testing at the same time.
Friday was the hardest day for Nicole. She was in a lot of pain and even taking Advil and using ice, numbing cream, biofreeze etc., she still couldn’t get relief. It isn’t as painful if she doesn’t walk or move around. It broke my heart to see her go through this. I spoke with the nurse at the doctor’s office and found out that the BNP was normal which made me very, very happy.
I wasn’t so happy with her CBC though. Her platelet count had dropped to right above the critical stage again which could be from the new medicine but she hadn’t even been on it 24 hours and she had some white blood issues this time as well as the normal red blood cell issues. I will call her cardiologist to see what/if I should be worried about this.
Saturday, the local health nurse came out to help us with the pump change. It was evident when we took the tape off that Nicole was having a slight reaction to the tape and her skin was pink but it didn’t itch or bother her. The nurse had a different tape and we are trying this to see if her skin will tolerate it better. The nurse also told me that I needed to give her the pain medication every six hours for the time being until such time as the site pain goes away. She will return on Tuesday for another pump change and drug increase.
Every three days the medicine has to be refilled and the pump has to be changed. About every two months the site itself will be changed. This is where the site pain comes into play. Every time the site is changed from about the third to tenth day afterwards there is a good chance of site pain. This is when the ice, gel, pain killers etc. come into play. I have been told that usually after this period this goes away. I can only hope.
Every time the pump is changed and the medicine is increased she has a chance of side effects which includes headaches, joint pain, jaw pain, nausea, diarrhea, dizziness etc., so far this hasn’t happened yet but she is still at a very low dose. In addition, she is slowly being weaned off the inhaled medication which she will totally go off of in September unless the doctor states otherwise.
My deepest desire is that this medication will improve her quality of life. Her doctor who is just absolutely wonderful in so many ways and I have so much gratitude toward him for many reasons told her on Wednesday how awesome she was and that he hoped this medicine would make her feel so much better so she would be able to see how awesome she was. Unfortunately, it isn’t hard to see that Nicole doesn’t have a lot of self-confidence in herself.
As stressful as this is for me I know how much more stressful it is for Nicole. I want to so much remain positive and hopeful that this will be the magic bullet but at the same time I don’t want the hurt and disappointment if this doesn’t work and she shows no improvement.
Today is Nicole’s first day of her senior year and this is my last year homeschooling her. Even though it brings on more stress for me I am looking forward to it because I have more structure to my day. I know I haven’t responded to many blogs and haven’t been very active on the site other than my own blogs but I hope that I will get back into things that are important and I’ve let slid during my “funk”. This site has been such a godsend to me in the last year and a half since I first found it.