Mike had another "S" yesterday and it was pretty big (it lasted a long time). Courtney was with me, and I believe it was the first time she actually witnessed one. Once this happens, I need to give him medication so he doesn't get another, but the side affects of the medication is drowsiness. The "S" itself causes the person to be totally exhausted afterward, and then add medication to that, and Mike was out of it. Unfortunately, it was time for him to eat dinner. I tried giving him drink and food, but he just kept coughing. I decided to stop giving him anything, because I surely did not want him to aspirate. He went to bed last night without his usual dinner and drink. He's down to eating so little to begin with, it saddened me that he missed out on what he usually gets.
This morning, his sores didn't look well....still. The one on his thigh looked a little better, but the one on his shoulder that had pretty much healed is now open again and the one on his bottom looks bigger (although both Courtney and Elaine feel otherwise). Mike has had some congestion again and for the past 3 days, he hasn't been coughing it up. It's no wonder I don't sleep well when I have Mike gurgling next to me. The chest P/T we give him hasn't been helping and I'm not sure what's going on.
Last night, Courtney and I met had our first meeting about our book. We met with the person who will be writing it and we're so glad she's willing to work with us on something so important. For YEARS I have been hearing "you should write a book about this", well now it looks like we're on our way. It will not happen overnight since we both have full time jobs and other commitments, but the fact that we spoke about the direction it will go and what we need to do to propose the idea etc., is a HUGE step in the right direction. I am SO READY for the world to know about Mike and his struggles, his strength and his bravery and the way in which our children have overcome this heartache. This could be my ultimate advocacy project yet!!!