- Family clown
- Master Negotiator
- Risk Taker
He is our family’s mover and shaker. If things get boring, count on Sam to stir up some fun, aka trouble and mischief.
Finally, we started infusions of Hizentra about 6 months ago. I get to administer them to Sam at home which includes placing 4 small needles in his body so the medication can slowly be absorbed. Treatments usually take 3-4 hours, including 1 hour of numbing cream before placing the needles. The treatments are painful and sometimes cause severe headaches.
Last week I had placed 2 needles, both of which were painful when Sam refused to continue.
Sam-Take them out! I’m done. (Tears streaming down his face)
Me-I can’t Sam. I have already drawn the medication.
Sam-Nope, I’m done! Get them OUT. I am going to rip them out.
After about 10 minutes of this I persuaded him to put Lidocaine back on the spots we were planning on using. 20 minutes later I was able to place the needles and continue with the injection.
Although we were able to continue, I had to leave the room afterward and go have a quiet cry in my room. Sam doesn’t like the injections. He hates the headaches he gets. He feels like he has enough problems from being exposed to meth during pregnancy. It’s not fair. And I have to agree that’s its not fair.
I reached out to a friend who’s daughter has similar issues. She was able to give some good advice and told us about a conference for families dealing with this issue. I want to go. I want Sam to see he isn’t the only one. That others understand what he is experiencing. Hope is difficult but not impossible right now.
I am grateful for new medications that are working to save his life. We are blessed! I would love to hear what those of you with a chronically ill child do to help buoy them up.