As difficult as the extended stay hospital “lifestyle” can be, some very special people make it a lot more bearable for super sick kiddos and their parents/guardians.
Looking back on our six-week stay on H12B (In-Patient Bone Marrow Transplant unit for Hematology/Oncology) at Nationwide Children’s Hospital, it’s clear that Caleb’s BMT nurse team was nothing short of outstanding. We will forever be indebted to them for the excellent care they provided our son during such a critical medical crisis.
Can you imagine the emotional strength it takes to do this job, particularly when it comes to taking care of sick children whose new home for the next few months is a hospital bed and a small stretch of floor? I never had to do the actual job part, but I witnessed it. It’s HARD.
To watch helpless, exhausted, nauseous kiddos (not your kiddos, I may add) scream and kick and fight day after day… while you hold them down for medications, dressing/cap changes, port access/needle changes, chemo baths, lab draws… the list goes on.
To have to come in every day to work with an exuberant smile on your face and an overly enthusiastic tone in your voice despite what may be going on inside (personally or professionally), knowing a sweet child’s spirits are on the line.
To be dependable and reliable with attending to med/IV pumps and catching alarms without a reminder… no matter what kind of day you’re having at work.
To receptively and politely ask (every time, without fail) as you step out of the room, “Can I get you anything?” (And I’m sure not always too excited about the long list that may ensue.)
To be the strong, positive one… the reassuring voice… to keep it together and get each crucial medical task done… like clockwork.
The PCAs (Patient Care Assistants) also do very important work- assisting the nurses (and parents) with bed changes, cleaning, grabbing needed linens/food/hygiene items, and more. Not at all diminishing their full list of responsibilities, their biggest medical task is to take the child’s blood pressure and temperature… the grumpy, exhausted, nauseous, frustrated child. The one who has been sitting in the same room for over a month. The one who hasn’t eaten by mouth in weeks. To force an angry two-year-old to hold their arm down to grab a Tempadot temperature reading for three minutes (yes, THREE LONG MINUTES) or allow a tight cuff around their limb for the tenth time on some days (due to circumstances/medications) is anything but ideal, but they do it with a patient and kind smile.
Truth be told, these nurses and PCAs not only were there day after day for Caleb, but they were there for Kevin and I. We obviously didn’t choose for Caleb to get sick and need a Bone Marrow Transplant. No parent would check that box. But these amazing women and men (some of them pediatric cancer survivors themselves) CHOOSE to daily walk alongside these children when they’re at their lowest… physically and emotionally. It’s a special kind of love they share with families, that says…. “I deeply care, your bad days are my bad days, and want to see you heal.” If it didn’t mean this much to them, they would have chosen a different profession.
They were willing to be the “bad guy” as many times as necessary… to save Kevin and I from an emotional struggle afterward. We had the option to leave or not help with any procedure if we felt it would emotionally make supporting Caleb more difficult as parents. Not only that, but both the nurses and PCAs willingly served as our daily sounding board for the crazy number of questions we asked, the worries we shared- medical and otherwise- though they couldn’t always answer them. Or honestly, maybe hoped never to have to answer. They were the listening ear for some tough days full of tears and doubts, giving constant reassurance in light of everyday questions like, “Does this happen a lot” or “Is this common?” They would also patiently answer the same questions for me multiple times throughout the process, when the exhaustion or stress frequently resulted in a poor memory… or kindly answer with an, “I don’t know, but I will definitely ask for you.”
A common psychological struggle (and really fear) many parents share on the 12th floor (Hematology/Oncology) is the loss of their child’s hair. It’s certainly not a harmful symptom in itself, but clearly shows the physical outward effects of chemotherapy… and can push you deeper into the reality of your child’s condition. Once the hair is completely gone, it’s not cumbersome. But in the midst of the hair loss, even if only quickly occurring within a 24 hour period (as in Caleb’s case)… it is far more challenging than one would expect. It’s insanely itchy and uncomfortable! For a two-year-old, that equates to a horrible sleepless night, intense screaming and irritability. Our friends offered Benadryl, to change his sheets… and ultimately provide Morphine when the screaming was clearly due to more than just itchiness.
Though many would view the 12th floor as a depressing scene of bald, sick, gowned children, many of our BMT nurse friends told me multiple times that it doesn’t bother them. They get to see the bigger picture and share the entire road to recovery – good days, smiles and laughs, their first bites of food and that oh-so-emotional bell-ringing ceremony that brightens discharge day. Their positive outlook on the whole scene also broadened my perspective while watching my own child face this physical appearance change, one that I was deeply dreading for a long time.
We would share almost daily personal conversations with Caleb’s nurse/PCA team, often accompanied by encouraging words and pep talks on both ends. A few of his favorite nurses would often come by to check on him if they heard him screaming or just to play and make him laugh… even when he wasn’t “theirs” that day. Many would sing along with him to his favorite “jams” on their personal pagers (Vocera system) to distract him or brighten his mood. One nurse came in offering to help gently remove the remaining hair from Caleb’s scalp to “rip off the Bandaid,” so to speak, after his rough night. (She wasn’t his nurse either that day, by the way.) Another could make you smile and laugh even upon crossing paths in the hallway on very little sleep… and shared the most hilarious and realistic animal sounds with the kiddos that I have ever heard. Others offered to play with Caleb when time would allow to help us enjoy a much-needed mental break, coffee or even weekday hospital Mass. And one day early on, when Caleb was suffering from crazy “roid rage” and screaming fits all day, his nurse offered to take him for a wagon ride in the hall for as long as I needed to recharge.
Personally, I could not do what they do… which makes me all the more thankful. BMT doctors are incredible- they provide competent daily in-patient care, are astoundingly smart and make critical medical decisions when it matters most. BMT parents have a tough job comforting and caring for their hospitalized children all day and night. But these are our children, our flesh and blood.It seems the work of a BMT nurse is never done- it’s constant and needed 24/7, around the clock. These are the people who cared for my child all day and into the dark night hours when it was most challenging, and when everyone else had gone home. When Caleb was the most grumpy and frustrated. When I was most exhausted and emotional and irritable. This job? It’s not for the faint of heart.
Next time you come across or meet a good nurse or PCA, tell them how amazing and appreciated they are. They need to hear it!