Managing a Hospital Stay as a CF Caregiver
Last updated: June 2021
Cystic fibrosis, in most instances, requires frequent hospital stays for everything from a “tune-up” to a full-blown lung exacerbation and much more. Often, this demands that a parent is courtside to their child’s bed, taking a crash course in all things respiratory.
Given the hardships at home and work aside, there is a wide variety of “tricks of the trade” that can help to ease the stress of spending 15+ days managing a child while in-patient.
Sleep is a hospital stay pre-requisite
While it may be an oxymoron that there’s no rest for the weary in a hospital, as a parent, sleepless nights make for foggy days. When your stress level is already at an all-time high, counting sheep is definitely not going to get the job done. At the advice of a nurse, I once resorted to Advil PM in the wee hours of the morning, only to find out that my 4-year-old went sleepwalking down the hall and I slept through it all. We needed a more practical alternative.
Window seats and convertible chairs can serve their purpose for a night or two, but my husband and I found great relief in the purchase of a high end, zero gravity camping cot. It collapsed and stored in the hospital room easily. However, when coupled with a snuggly sleeping bag, its built-in padding made catching Z’s more probable than problematic.
Journaling can take on a completely new meaning while in-patient. The stillness of the night is definitely when the questions and concerns from the day have a tendency to overwrought an already stress-filled mind. Having an outlet with which to jot down questions for residents and interns during rounds can quickly clear your mind towards a more meaningful conversation in the morning, even if the coffee hasn’t brewed yet.
However, taking notes while speaking with medical staff, even discharge planning nurses, offers caregivers a detailed record to rely upon for everything from scheduled tests and results, to orders for home-based care and insurance-related matters.
In this day of technology, a laptop is handy, but can at times not be as practical as a notebook. During subsequent admissions, this journal is a quick lifeline to previous meds, side-effects, test results, etc.
The fine art of packing
Packing for a cystic fibrosis hospital stay has changed over the years and truly depending on the age of my child, has been streamlined. As a toddler, it was survival at all cost. That meant a consistent variety of toys to switch out of the crib.
Toys and entertainment
Infectious disease protocols have increased so, depending upon the care center, many toys for a CF patient can not go back and forth to the playroom. It was commonplace for us to arrive for hospital stay with a PlayStation in tow so that we were not monopolizing the few sets that were available, but also so that we did not need to worry additionally about cross-contamination.
A checklist of must-haves
After a number of years, we started an itemized checklist: high fat/salt snacks, slippers, Clorox wipes, chargers for all electronics. We submitted requests for an in-room microwave and a small fridge, packed personal care items for both my child and myself as well as comfortable clothing, hospital gowns aren’t always required.
We were very fortunate in that our care center permitted the inclusion of our own meds. Stowing our own enzymes and vitamins made mealtime and snacks more practical so as to not have to wait for the pharmacy to send meds.
A touch of home
And of course, the sprinkled touch of “home” was an absolute priority with photos and posters of friends and family alike. During a holiday admission, we decorated my child’s room from floor to ceiling with Times Square panels so that our teenager could still feel the excitement of ringing in the New Year.
Taking care of yourself as a caregiver during a cystic fibrosis hospital stay is not easy but it is definitely a must! Bringing along a Kindle, a book, or a laptop; distractions always help. However, getting out of the room and taking advantage of some fresh air can work wonders.
My husband would often wake before our son and take a cup of coffee to the outside garden for some basic privacy and the opportunity to relax in the morning air. I would pack my running sneakers and after giving the nurses a heads up, going out for a morning run would give me the same quiet mind and stress release to face the day ahead. I will never forget the nurse who talked me into a run after a particularly difficult night knowing it would reset my mind, and it did.
Whether it was a walk around the hospital campus with my child or a stroll for ice cream and coffee, getting out of the room (while keeping protocols in mind) was vital for both our mind and body.
Aging out of sleepovers
Independence comes at a cost and in this case, the price was my heart. Somewhere around the age of 17, my child decided that he could handle the overnight activities of the hospital all on his own. I was for all intent and purposes, fired from my job!
There is a certain rhythm to the routine of the hospital stay and the morning tends to be the busiest with rounds, therapy, meds. Naps are sure to follow in the early afternoon and with Xbox Live, there’s a never-ending line of friends willing to jump in on a game of Madden.
We found the next chapter of parenting had us coping with cystic fibrosis hospital stays coupled with a full day at work. We quickly moved from sleeping on the cot and heading to work during the day, to sleeping at home, working, and then having family dinner on tray tables, bedside. However it was managed, time together is vital for his support.
In the end, his strength and confidence sent us home. Our organized lists and notes set the stage for how he now handles himself and his own healthcare. What more could we ask for?
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