Not the worst day ever, but not the best. Eric says he didn't sleep well again last night. While overall, he's improving, he still struggles so much. He has so many secretions and needs to be suctioned often. He has a really difficult time with trach care because it makes him cough and gag so much. Today, he has no motivation to do anything but watch cartoons. When PT/OT came, he obliged and sat in the chair for awhile, but it was tough for him. He got really short of breath. He doesn't want to eat or drink anything, and we're trying to progress him to solid food. He'll eat pureed fruit, applesauce, yogurt, juices, but only a few bites or drinks of each. This is all new to his stomach. He's been getting NG tube feedings all along, but he hadn't eaten real food in a month.
Lately, I find myself asking "Why?" Why did this have to happen, why does he have to suffer like this, why is it taking so long for him to get better? When this little 3-letter word creeps into my head, I try to remember that there are over 400 beds in this hospital, all filled with kids who have parents who are likely asking the same question. We're not alone.
To all my friends who smoke, come sit with Eric for a day and it will be obvious. You won't want to continue in a habit that likely will cause you to be chronically short of breath. It's a miserable way to live. Eric never had a choice. You do.