Piece of advice: keep all of your bills and the receipts or credit card confirmation codes when you pay them. My husband and I set up an Excel spreadsheet, and we organize every bill by date, location of services, date paid, confirmation of payment, and amount billed. We also keep track of medical mileage, and we keep all of our prescription receipts. These are logged in our spreadsheet as well. Now, when we go to do our taxes, everything is already itemized. While frantically trying to survive my son’s hospital stay, I didn’t have the presence of mind to think of this on my own. Luckily, my parents kept level heads and helped me navigate this concept. If you are able to get a head start on this, I seriously suggest you do it. If anything, it’ll offer some distraction from the current circumstances.
On the topic of spreadsheets, I also keep a spreadsheet of N’s vitals and growth. We weigh him every night, and I also take his heart and respiratory rates (since he’s too little for accurate readings on an at-home blood pressure cuff). I keep all of this data sorted. Each tab on the spreadsheet is labeled by the year, and I organize the data within each tab by number of days post-transplant. Then I plot the trend lines of each. The Y axis is the data to be analyzed; the X axis is number of days post-transplant. That way, I can see a nice curve or trend in each area of interest. I also have a section that shows me the maximum value, the minimum value, and the mean, median, and mode of each (weight, heart rate, and respiratory rate). That way, if anything starts to seem “off,” I know exactly when things changed, and I can have that information readily available for the transplant team if they need it. Now, I’m not so on top of things that I update this every day. But if I remember to update it every few weeks with my nightly logs, then it’s not such a terrible mess to tackle. It also gives me piece of mind seeing that his numbers are “nominal.” And on days when I feel like he’s not growing, I can look back and remember how teeny he used to be, because the data doesn’t lie! He really is growing! It’s just sometimes harder to see the forest for the trees.