Special Needs Dad 365

Livy's Care Notebook
When Allison travels for a few days, which she is currently doing, I'm entrusted with Livy's Care Notebook. It contains all of her doctors' contact information, last appointment dates, medications and doses/times they are given, feeding schedule, medical supply company contacts and what is ordered from each, and much more. When I thumb through the pages, it reminds me of how serious Livy's condition is. So much of it is common place because it is a part of our daily lives. But the fact that she has a ventriculoperitoneal shunt (VP shunt for short that used to help drain excess cerebrospinal fluid in her brain), a mediport in her chest, a MIC-KEY button and tube for feeding, and needs to have the food to go with the feeding tube, is some pretty serious stuff. Not to mention, if we were to run out of her seizure medications, that would be a very, very bad thing.

What I wish came with a book like this is a step-by-step parent's guide to caregiving for the chronically ill child. Wouldn't it be nice if it was a two-for-one deal? No, there is no manual for this type of life. It's learn on the fly, trial-and-error as you go. What I hope for is not to mess up too badly because if something goes wrong, it is much more than saying you’re sorry and moving on. It could mean a trip to the ER followed by a lengthy hospital stay or worse. We have had those stays and watching your child going through an incredibly challenging time for months is literally like sticking a knife through your chest right into your heart.

So while Allison is away, I will go by the book. For now, it's the best Encyclopedia Olivia we have.