Monday, May 6th is Nurse Appreciation Day and, girl, do we have some nurses to appreciate! I am often asked how I am able to do all I do. There is only one answer: I could not do any of it without our amazing, caring and dependable nursing support. There is a full roster of medically trained professionals that go above and beyond to make sure that Adelaide is living the best life available to her. Adelaide’s army consists of our daytime nurse who is with us 4-5 days a week for 10 hours/day, a night nurse who is with us 2-3 nights a week for 10 hours, a palliative care nurse practitioner that visits every two weeks, a nurse babysitter for date nights and several calm and patient individuals that I’ve trained to care for Adelaide. To say that I am grateful doesn’t even come close to expressing my feelings.

Adelaide qualifies for 200 days of nursing a year through our insurance and 80 hours per week through a Medicaid waiver. Aside from paying our hefty insurance premium, the scheduled nursing care is free of charge to us, (nurse babysitting is not but, gosh, is it worth every penny). The amount of care Adelaide qualifies for is amazing but is also bittersweet: she qualifies for these services because she IS so medically fragile. That said, we still had to fight for every stinking hour. We were denied the first time we applied for the Medicaid waiver and the second time she was only approved for 20 hours a week. It wasn’t until we hired a nurse and the state saw her detailed notes, stating just how challenging Adelaide’s care can be, that we finally got approved for 80 hours of weekly care.

But I’m getting ahead of myself. The biggest challenge with home nursing is simply finding a nurse. I had been warned by friends who had home nursing that it can be incredibly challenging to not only find a nurse that would pick up your shifts, but that you often had to settle for subpar care because that was all that was out there. Additionally, turnover can be high and be prepared for missed shifts. Awesome. To start, we interviewed several nursing agencies and chose one based almost entirely off the personality of the administrator we met because they were basically all the same in function. It then took them three weeks before they could even find a candidate for us to meet. It was clear within moments of meeting this first nurse that she was not comfortable with Adelaide but I was so scared that there wasn’t going to be another candidate that I honestly considered hiring her. Until Miguel reminded me that I would NEVER feel comfortable enough to leave the house…which was one of the main goals of getting a nurse. So, we asked for them to send another candidate which took another two weeks.

That’s when we met Nurse A, I’ll refrain from using real names to protect privacy. There is no person in this world that I trust more with Adelaide’s care than Nurse A. From the way she speaks to Adelaide, comforts her and truly cares for her - she never stops thinking about what is best for Miss A. She comes with us to doctors appointments and is a walking medical record of Adelaide’s recent history which is particularly valuable when my memory confuses what happened last month vs last year. Seriously, after awhile it all kind of blends together. We speak together at length about Adelaide’s medical care, different things to try, or what is currently ailing her. She never oversteps only offering opinions or advice when they are requested. Unless it is time to take Miss A into the hospital, then she will speak up and advocate and I can’t tell you the relief to not always be the one making that call. I know we are lucky, I know our experience with Nurse A is not the norm. I figure with all the crap Adelaide has to push through in a day the very least the universe can do is send her a caregiver as caring and compassionate as Nurse A.

When we have to travel without Miss A, Adelaide’s army steps up and will work 12 hour shifts to cover our trips away. Nurse A, N and K to the rescue!Photo by Nurse K — When we have to travel without Miss A, Adelaide’s army steps up and will work 12 hour shifts to cover our trips away. Nurse A, N and K to the rescue!
Photo by Nurse K

Night nursing came on more recently when Adelaide began having serious respiratory issues that would require me to be up caring for her. I’m not gonna lie, the thought of having someone in my home, who doesn’t live there, while I’m asleep, was very odd at first. But being able to sleep through the night is THE ABSOLUTE BEST!!! Again it took forever to find someone, the first night nurse was with us for a month and then quit with little explanation. It took two months to find a replacement but when Nurse N walked in and recognized our Ashley Longshore painting above our dining table I knew it was going to be a good match. Her positive energy and attention to detail never ceases to amaze especially at 7am after working all night.

We actually found our main nurse babysitter five days after moving to Chicago when Adelaide was hospitalized for aspiration pneumonia. I was in a full panic when doctors said she was going to require an NG tube and eventually a G tube to eat/drink. With Hamilton opening and the various associated events, how in the world was I going to be able to find a babysitter to watch my baby who eats through a tube and has seizures but could also entertain Jackson? I was word vomitting to the nurse’s assistant, (now a full RN), who was helping care for Miss A when she said that she babysits. Phone numbers were exchanged and history was made. Nurse K has been watching Jackson and Adelaide for nearly three years now. She’s basically family.

Not every nurse is amazing, oh the stories I could tell… but Adelaide’s Army is the best. Without them I would have cracked into a million pieces by now. With their help I am able to better care for Adelaide as well as advocate for her and others. The ripple effect of a good nurse is immesurable. To all who choose this field and so selflessly care for others: we see you, we appreciate you and we thank you.