Whatever happens, do not ever allow him to take Pulmozyme, (also known as DNase). It can be very destructive to the lungs. Also avoid feeding tubes at all costs. I am 57 yeaers old with CF. I was diagnosed at 4 weeks old. There is a way to survive it. If you or your family ever have questions please feel free to contact me at 830-214-5088 or email me at ericanderson101@aol.com. I wish you, your grandson and all of the rest of your family the very best. Enjoy the adventure; despite its periodic ups and downs. :0)
Eric Anderson