If you should ever be the unfortunate parent of a child who requires hospitalization there is something that ranks in the top 3 things that you need to bring with you. First is your toothbrush, second is a good pair of socks. And third, and probably most important, every parent should keep what I like to call a little black book. In this day and time of technology you may not need an actual physical notebook, but if you don't have all of your tech gadgets with you grab a little notepad and pen to stick in your bag.
This book should be at your fingertips 100% of the time. Even if you are not someone who has ever journaled. It could prove to be your single most important tool and 2nd set of eyes and ears at a time when you are mentally and physically exhausted.
Now, you may ask what to put in the book. One word....EVERYTHING! Log anything and everything that you feel may be important to your child's care. This could be doctors who come in, tests being ordered, medications that are prescribed, and any changes you note about your child that could help the pros.
Prior to Matthew getting sick I had never been someone who journaled on a regular basis. Besides the typical 12 year old girl stuff that I did many moons ago. The night that Matthew went to the ER the very first time when his journey began I pulled out my small planner. This was a planner I used to keep dates organized for day to day stuff. While waiting for the first nurse to come into his exam room something came over me and made me remember that in the back of the planner was a NOTES section. Very tiny, small lines with not much room to write. Nonetheless, it was space. For a reason that to this day I still can't explain I asked the first nurse for her name and logged it. I then made notes with times, etc. of the different things she was doing for him such as starting an IV, medications given, and reactions that he had. At the time I had no earthly idea why I was writing all of that stuff down. (In my mind, I was still thinking this was a reaction to anesthesia and he would get some fluids and be on his way. Little did I know!)
As we continued upstairs after the doc decided to admit him, I continued to journal. Over the course of the next week I learned quickly just how long a body can go without sleep or much food in order to survive. I did not want to leave Matthew's bedside in case there was a change or he needed me. Even through the overwhelming feeling of exhaustion I continued to log down anything and everything I felt was pertinent to his care. By this point I dismissed the urgency to write down info to the notion that in my extreme tiredness I would not remember something later on that could be crucial. It could have been the lazy side of me saying that rather than trying to obtain medical records later if I had a question about a procedure or medication I would have it at my fingertips. Who knows why.
All I do know is that the notes section of the little black book that I carried with me became filled with scribbled information. I had a record of every nurse that came into contact with him. And the tests that were ordered early on to try and understand why he was so critical. I had never given that NOTES section a second glance since I bought the planner. To be honest, I didn't use the calendar on a regular basis. Just for the super important dates I was scared I would not remember.
This little book proved to be the most valuable tool at helping me to see in print the things that I could not have possibly remembered without looking at it. It was invaluable by allowing me to be the most effective patient advocate for Matthew and be his team leader when it came to his care. The doctors were in total control of his health and healing but I was his team captain and cheerleader. My husband and I were the ones that needed to be able to answer the questions posed by one physician to the next. This little black book allowed us to know in a glance what tests had been ordered and by who, and what his reactions to different medications were.
One thing I have learned over the past 6 years is the power of information and how amazingly complex and busy our lives can become. This brings with it the need to keep organized in order to keep your sanity. As the years have gone by my little black book has been upgraded to keeping notes on my laptop or phone. But, I keep that original little black book in a safe place in my office. From time to time I pull it out and read over those early notes about how sick my baby was. It offers me a time of reflection to give thanks and praise for how fortunate we are to still have him with us today.