Hubby has now had his first infusion. The first one consists of two parts, two weeks apart. He had a reaction during day one but it was quickly cleared with Benadryl. He began with Benadryl for the second part and had no issues. The infusion center which was not available for his first visit due to the elevator being out of order, does not allow for visitors. He had no privacy curtain and the restroom was not wheelchair friendly. I had to sit down the hall. I was able to get him some lunch and they called me back when he needed the restroom. From leaving home to returning home, it was more than six hours.
The infusion process includes an injection of a steroid. He was tired when we returned home but was feeling stronger the next day. He could stand easier and his hands felt better. His energy level has been better also in the past five days. The next infusion is in the fall. The schedule follows a pattern that should keep us out of snow days. It is an hour long drive. We drive home just ahead of rush-hour traffic.
We’re a little more encouraged. He should go into a remission in three months and should have noticeable improvement in six months to a year. I hope it takes the spasticity away. It used to happen after bedtime but now happens during the day as well.
I suppose it may be wise to put off buying a wheelchair accessible vehicle for a while. It’s a guessing game when it comes to getting equipment. Will he improve to where he does not need it or will he remain the same or progress despite treatment?
It stresses me out. I have no one to give me a break. I leave for no more than two hours or so. He can sometimes make himself a cup of coffee but he can’t fix himself something to eat. He needs help with other things and really should not be left alone. Sometimes he forgets to lock one wheel of the wheelchair. Sometimes he has brain fog.
I miss doing things together. I miss my family. Friday will be our fifth anniversary. I love him so much. Sometimes I fear I’ll bury another love of my life. In the meantime, we adjust and adapt and sometimes I cry just to let go of some of the pressure.