A notebook was one of the biggest sanity-saving tools my husband and I used when we were caring for our medically fragile son, Sullivan. It was a simple three-ring binder that I put together which held all the important information about our son’s life and the schedules we kept. This notebook went with us to every doctor appointment, hospital stay and outing. The contents were an easy reference for the doctors, nurses, therapists and other professionals who worked with us to manage our son’s care, at home or at appointments. It was also a reference throughout our day and for any friends or relatives who wanted to help us out. Without this notebook, we would have found our lives far more hectic than they needed to be.

The very first page in the notebook was Sullivan’s daily medicine, feeding, and therapy schedule. We used our computer to print a chart which showed what needed to be done each hour. As medicines were given to him, we would initial right on this printed chart. This gave us a record of who gave him his medicines and when they were given. We also recorded diaper changes on this schedule with a “W” for a wet diaper or “BM” for a bowel movement. At the end of the day, I’d sum up how many of each he’d had for the day and record it at the top of the page. If there was anything unusual happening with his urine or bowel output, we could easily tell. This easy summation and record of our son’s days made it easy for the doctors or home nurses to see what his life had been like since they’d last seen him. We went through a lot of paper with this method, since we printed a new sheet for every day, but it kept our days organized, and more importantly, documented. My husband and I put this together in the very beginning of our son’s health problems and we continued to find it useful throughout Sullivan’s life. In fact, when my grandfather was in hospice care at home, several years later, my family asked me to create a similar chart for him.

The next page of the notebook was a list of Sullivan’s medicines and information about his feedings. We listed the name of each medicine he was taking, the frequency it was given, the dosage, and the concentration (mg/ml).We copied all of this information off of the pharmacy bottles. Rather than carrying all of his many medicines to the doctors’ offices with us, we had the list handy. The nurses would often photocopy it rather than recording it all by hand in his chart. I always made sure the date was at the top of the page, so that I could easily tell if the list was up-to-date. For his feedings, I included the amount of formula he took per feeding, how often he was fed and what kind of formula we used. He was tube-fed, so his feedings were regulated by his doctors. By keeping this record, it was easy for the specialist doctors to see what had been prescribed by his primary doctor. If he had eaten by mouth, I imagine a diary log of what and when he ate would have been similarly helpful.

I also kept a list in the notebook of all doctors, agencies, and therapists that worked with Sullivan. Along with their contact information, this was useful when the team of professionals needed to consult with each other about his condition since I always had the numbers they needed on hand. A page protector to hold business cards would have also worked well for keeping all of the pertinent names and numbers on hand.

As important as those contacts were, having Sullivan’s medical history on hand was also important. Whether a reference for new specialists, or a quick reminder for ones we hadn’t seen in awhile, carrying a brief summary of his history helped to avoid miscommunications about our son’s medical condition. By the time he was six months old, he’d had numerous hospital visits, surgeries and therapies to go along with his long list of diagnoses. There was no way I could remember it all in detail without this list. This was another of my notebook pages that was frequently photocopied by doctors’ offices to avoid long hand copying into the file. For my own information, I also included emergency instructions for replacing his tracheotomy tube and his gastrostomy tube in this section. I never liked to consider that I would have to do either of those things myself, but at least I had reminders of how to cope with this, just in case.

Those lists and schedules all made it easier for doctors’ offices and home nurses to help our son, but we also had lists and schedules to help family, friends and volunteers who came into our home to help us. I had a “to do” list that was really for me. It included my daily, weekly and monthly chores such as cleaning and sanitizing all of Sullivan’s equipment, doing laundry, making formula, and vacuuming. It was my master list. The few times I was too sick or otherwise unable to care for my son myself, this list made it easy for someone else to step in to get things done. The other “to do” list was a sort of wish list of things I wanted done, or that our daughter would enjoy doing. This way, when someone offered to help out, I did not have to think of something off the top of my head. I handed them the list and invited them to choose something that appealed to them. If they chose something around the house or with Sullivan, I was free to spend the time with our daughter. If they chose something with my daughter, I was free to work on something productive, or just to take a break with our son while they were busy. Either way, my family benefited from the generosity of these helpers and they were able to do something they enjoyed.

I kept all of these lists and schedules, except our daily schedule, in clear plastic page protectors to keep them clean. I had made all of them on the computer and saved the files, so it was easy to change them as needed and then print a new copy. Medicines, feedings and even routines changed often, but it was easy to keep up with them all with this system. I saved the old ones in separate notebooks, as well, as a record of what we did for our son and when. It was a useful reference system when we were unable to remember details. I keep them now as a reminder to myself of how organized I can be when I need to be, and to be honest, as reminders of what day-to-day life was like with Sullivan.

Beth Christiansen spent 21 months as primary caregiver for her infant son, Sullivan. He was diagnosed with quadriplegic cerebral palsy, with numerous secondary diagnoses, when he was six weeks old. She counts her son’s life as one of the hardest and most blessed periods of her life.

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