The Unsung Heroes
9-9-2006
A huge part of
Jaymun's treatment revolves around receiving his chemotherapy and meds
everyday. He also has to have eyedrops put into his
eyes every four hours and have "vitals" taken every 1-4 hours, depending on
what treatment he's getting for the day. This is where those ever important
people called nurses come in. Whatever would we do without them?
I depend on them to help me administer all the medication
(except for the oral meds, I'm slowly stepping up to help on those!) and keep
up on Jaymun's blood pressure and temperature. They're the ones who mediate
between the parents and the doctors-which can't always be a pleasant job. When
I have a question (and since we're new to all of this, I have a lot of them!) they're
the ones I go to. When Jaymun wakes up in the middle of the night with a
burning fever or he's in pain from the mouth sores during chemotherapy, the
nurses are always right to the rescue. I take my cues from them - I depend on
their reactions during these times to keep me grounded when I have to watch my
baby suffer from this horrible disease. They assist the doctors with his
painful procedures. They are always
reassuring and confident in figuring out the best way to relieve his discomfort
- and I rely on them to be the anchors for me in Jaymun's treatment.
I wanted to point out two nurses who have become an
especially bright spot in our days and nights. They are Jaymun's primary care
nurses and I'm eternally grateful that we were fortunate enough to get them
when we were admitted. Over the five weeks that Jaymun has been in the
hospital, we've had quite the large assortment of different caregivers-most are
extremely wonderful and others not quite as much. Believe me, when your child
is sick and has to stay in a hospital for huge lengths of time, the kind of
nurse you get on a shift can really make or break your day!
Jaymun's primary nurse on day shift is Nurse Bonnie. I know
she occasionally reads this website, so I thought we'd surprise her, making her
blush in private by extolling her praises online. Maybe she doesn't know how
wonderful she is. Maybe she chalks her nurse duties up to "just doing her job".
But she's truly a blessing to me. A huge
blessing, the kind that makes you wonder what you did right to get such a great
nurse! She breezes into our room in the morning, always with a cheerful smile.
She lets me take care of Jaymun as much as I want to and doesn't act like I'm an intrusion
in her schedule when I try to set the pace for his day. Babies don't have a set
schedule like older kids do and there are so many times that his breastfeeding
and naps don't coincide with her schedule of taking his vitals or giving his
meds. She doesn't make me feel like I'm messing up her routine and I appreciate
that. Not all the nurses are so flexible-some of them wake him up, regardless
of whether he just fell asleep or not. Others act like I'm putting them out
when I ask if they could come back in a few minutes so I can finish nursing
him. But Bonnie just treats us like we have a say in what happens and that
makes all the difference. Because there's
very little about this leukemia that we do
have a say in! She takes extra time out just to talk to Jaymun and makes
him smile. She even asks me if I've eaten yet and holds him for a few minutes
so I can dash out to get some food. (And by the way, that is an enormous bonus-sometimes I only get out
of his room for fifteen minutes the entire day!) I just like her, period. She
knows all of this anyway, because I try to constantly tell her she's our
favorite. But sometimes it's nice to let other people know when a good thing
comes your way - and Bonnie is definitely one of our good things!
And then when the day shift ends, I pray that Nurse Evelyn
is on duty-because as most parents know, that's when most kids seem to get
sick-during the night. It's hard enough to take care of a baby and get very little
sleep. But doing this in a hospital is definitely much harder. Evelyn also has a
bright, cheerful personality - I feel tons
better going into the night when she's taking care of Jaymun. She always rushes
over to him and starts interacting with him when she comes into the room. I can
tell she really does like being his nurse. She's not nervous about snuggling
with him or handling him. I admire that about her-and when she talks about
Jaymun's eventual recovery, I love her even more. There's never a time that she
tries to mention him not getting
better or in a some subtle way tries to prepare us for him not coming out of
this treatment 100%. I'm not naïve about this leukemia thing-it's the topmost
concern on my mind obviously. Not a minute goes by that I don't wonder how this
is all going to end. But hearing her talk about all the things he'll do when he
grows up or telling us that we'd better send her pictures when we're finally
home for good-well, that does my heart wonders to think positively about the
future! I also love that she tries so very hard to get into our room during the
night before Jaymun's machines start beeping and need to be adjusted. She
also does her best to let him try to sleep as much as possible and lets me call
her to come in when he wakes up to eat so she can do his vitals. It's
impossible to explain how exhausting it is to take care of him all by myself, especially
through the long night. Evelyn just makes my nights so much nicer! She's been
our greatest cheerleader through all of this. (And she has already brought me
about one hundred glasses of water, so I'm going to owe her big time when we finally do get out of
this place!)
I think the way I can best describe the nursing care at
Children's is respect. They really try hard to let the parents feel like
parents. I don't think I'll ever get used to letting other people dictate the
terms on which my son has to live, but the medical staff for the most part
really tries hard to work with the parents and make them feel like they have
insight too as moms and dads. They realize our world has turned upside down
with our precious children's diagnoses and there's not a whole lot that makes
much sense to us anymore. They try to make our circumstances a bit more humane
by encouraging the family to visit or being interested in things happening back
at home. The nurses deserve to have somebody praise them once in a while. It
can't be easy to come to work and have to see children suffering everyday. It
can't be fun to have to be the one to administer shots or change dressings or
put stinging eyedrops in or the zillion other
not-so-pleasant parts of their routine. But they do it, most of them with a
great deal of compassion and patience. And so in honor of little Jaymun's
caregivers, we say thanks. Because for what it's worth, bedside manner is everything...
