When we first – you notice I said “we” – started getting infusions my daughter was in middle school. Of course, I mean meant my daughter got infusions but infusions affect everyone involved. Middle school is always a tough time but having to face infusion every 3 weeks added to the strain. Our doctor and staff gave detailed information about what to expect and how to prepare for the day but until she actually had one, it wasn’t real.
We arrived at the infusion center and were greeted by the nurse who led us to the room where we would spend the next four hours. It was a nice room – comfortable sofa and chairs, a TV and our own bathroom. I was trying to be very calm but inside I was nervous. I am sure my daughter recognized it. She was not happy to be there and did not want anything to do with it. And so it began….
The first ones were rough – not because of the infusion – but because of the reality of what was happening. I kept hoping that these were a temporary fix and her immune system would somehow get what it needed and manage on its own. But as she is now 16 years into getting IVIG – obviously that wishful thought is now a distant memory.
Over the years, we have learned how not to have infusions and how to. When she was first starting, I wish I would have just let her be. I tried to cheer her up, tell her to be tough, convince her that it wasn’t that bad but I should have let her tell me how she felt – just listened. After all, if she can’t talk, yell, be angry, and cry with me, who can she express this to? Also, I wished I had been more patient while she learned to cope with them. Her whole idea of normal just changed – what did I expect?
During her first infusions, she wanted to sleep through them almost like pretending she wasn’t really there, but her blood pressure would drop too low so the nurses would have to rouse her. The day would drag on and on and our fuses would get shorter and shorter. It seemed the hours were longer than normal.
I finally found the best way was to make-a-plan for the day. Bring her favorite movie or surprise her with the new one she has wanting to see, have grandma come visit, order pizza, anything to make the time pass positively. I planned ahead with something she would enjoy.
After a while, infusions became a routine that went much smoother and as my daughter began to feel better from them, the time spent during them went better too. The improvement in her health was a slow process but as she felt better physically, the better she coped with them. The improvement in her health was amazing. She was once again able to live a more ‘normal’ life aided by IVIG. For that I am thankful!
Anonymous IMMUNOe patient