Tuesday, October 21, 2014

Hospital Advocacy (or How To Help Others Survive a Momma Bear Attack)

If there's one thing I have learned in this lifetime, it is that I am the best advocate my child can have. Sure, others care...doctors, nurses, teachers, aides, community support workers, friends and relatives, but God gave ME what my child needs in the advocacy tools department.

I was raised in a family with multiple relatives in the health care professions from physicians to nurses. I was taught very young that a doctor's word was the LAW. Period. What he says goes, and I am merely the patient or the student. For years I took this to be true. My grandfather was a well-respected cardiologist who started the first cardiology practice in Alabama and spent many of his years making house calls even! I would bow at his feet when it came to his wisdom, opinions, or comments on all things medical. He took me to make rounds and even to the OR to watch his best friend, who he hired from the Mayo Clinic, perform several open heart surgeries.

But having a child with special needs has changed that. If there's one thing I would like to share most with parents dealing with anything from a medically fragile child to a kiddo getting braces or visiting the ER with a sports injury, it is this:
You know your child and his or her needs and moods and normals more than anyone else!
That being said, you have a huge amount of both weight and responsibility on your shoulders. Sure, you may not be a physician or research scientist or therapist, so we must listen and learn and do our own research (but not "think" we are always right or expert in the medical department) so that we better understand and can make decisions.

But there's one area that pops up on blogs and message boards, and such, that really makes me feel uneasy. That topic is the one of students, residents and young physicians in the hospitals.
Disclaimer: I am well aware that becoming a physician takes much, much more that classroom time. I am well aware that on-the-job training takes someone from the brain power of medical knowledge to the ability to assess and diagnose, treat, and hopefully send a patient away healed. If you have spent any time around hospitals, you know all too well the scene of a person in a lab coat being flanked by at least five other people who look like they are not yet old enough to drive, lab coats floating along beside and behind like gliding seagulls' wings, descending upon your loved one's hospital room. Sometimes it is a welcome sight. Garrett LOVED having the residents and medical students come by because his assessment was that all of these folks came to P-L-A-Y!! And this was partially correct, as far as he knew. And this was fine with me...
during the day...
but not...

During this last hospital stay, I found myself feeling the momma bear sort of bravery coming on the morning after he spent the night inpatient. His nurses had worked so hard to let Garrett sleep, not making a peep and not even making him stir while they pricked his finger to check his blood sugar every two hours throughout the night. But then as the sun came up and I realized he was going to continue sleeping past his usual early wake-ups, the students and residents glided in.

I do NOT mean to be disrespectful of any of you in the medical profession, and I LOVE young people, especially ones who chose to spend their lives getting very little sleep, investing a small fortune, sacrificing a normal college life and working your tail off while helping kids like mine! I realize that you may not have slept all night, have this as your first rotation in your (very exciting) third year, have a week until you will have M. D. after your name, or are really interested in my son's case. But when you enter my child's room, you have entered our home away from home, our personal space, probably me in my pajamas that early, and most importantly, the little room which holds all the tools for my son's rest and recovery.

So last Thursday when the gulls glided into Garrett's room for their rounds (after the attending M.D. had already rounded on Garrett QUIETLY) I smiled and welcomed them as usual. But this was different. They surrounded his bed, 5 or 6 of them total, introduced themselves, asked the same questions we had answered the previous night in the ER and on the Peds floor after admission. But it then escalated into a male resident growing above the polite, peaceful whisper and moving to a low voice, almost as if he was hoping to ease Garrett out of slumber so they could assess him. I made a couple of sheepish, shy comments about how "Hey, sleep is why we're here! Need rest! Glad he's still sleeping as this isn't our usual in the mornings..." and so on, but they didn't take the bait! I attempted to step towards the door and began to tell them we could talk out in the HALLWAY where there aren't sleeping children, but by then it was too late. I wanted to kick myself as Garrett began to wake slowly to these people around his bed staring at him. He perked up and flirted with the two girls and talked to them, and I began to steam inside.

That's it, I have decided. We have spent enough time inpatient and at teaching hospitals being an "interesting" or "unusual" case, and I am pretty much over being okay with anyone in our room at anytime they like, on their noise and physical assessment terms. I read on a blog that one mom even posts a sign on her child's hospital room door requesting everyone to knock and then wait to have the mom or dad meet them at the door. I think this isn't too much to ask except during nurses' assessments overnight, and most nurses are so silent I don't even always know they have come in!! God bless them!

So if you happen to read this and are new to being a mom of a kiddo who is special needs or just is a klutz or daredevil and ends up spending loads of time in hospitals, please know that YOU are in charge even when your child is inpatient or in the ER. No one else can advocate for your child like you. And when the time comes, it is not rude or disrespectful in any way to require that medical staff adhere to reasonable boundaries that are best for your child or loved one. I am aware this can pertain to having a spouse, friend or parent in the hospital as well.

Students and residents: Just remember that while the no-sleep insane shift you are on may be the worst you can imagine as far as exhaustion, you have no idea until you have lived in a hospital for weeks or months or years on end, are caregiver for a child or adult who has 24 hour needs at home, or a mom or dad of an autistic kiddo who knows no such thing as night versus day, what exhaustion and desperation are like. Please adjust your radar to include an assessment of each parent, patient and room you enter, picking up on cues for quiet, anxiety or fear. And then use those cues to customize your attitude and approach. If you are aware and respectful, I will open my book on my child and his condition and even praise you and encourage you in your career. But if you don't, you will not get anything from me but a stare and a point, and hopefully you have enough social skills yourself to know that means to get out. I will then meet you in the hall where we can talk aloud.

Again, I appreciate those in the medical field, but there are many, many pieces to the puzzle of a kiddo getting well, and one of those includes sleep!

Godspeed to you on this journey, parents, and you remain in my prayers always!


  1. I read this entry & felt like you were writing it just for our son Bodie. My wife & I have had similar experiences with Hospital staff usually close to Discharge, when Bodie is in a "step-down" or floor room. The worst (repeat) offenders? The vital checkers. I have had it with vitals being checked every three hours. Bodie's uninterrupted rest is more important than a set of vitals on a chart. Thank you for saying what my wife & I have often felt. For the record, we put a stop to it also.