A Quiet Medical Epidemic (part 1)
There is a medical epidemic that has been quietly brewing in my community for a couple of years. For the past 18 months, it has been standing on my doorstep threatening to come in. For short periods of time I have been able to back it up to the sidewalk, but inevitably it makes its way to my door.
This week it barged in the front door unannounced.
The weight of this epidemic is so heavy that I barely have enough strength to write about it.
I know from previous experience, that if I don't stop now to write, 3 or 6 months will easily pass before I can breathe long enough to gather my thoughts and talk about it.
The last time this epidemic barged in it nearly took me out as Levi's life also hung in the balance. I simply can't let that happen again.
My home is not the only one this epidemic threatens or barges in on. In fact, most parents I speak with who have a child with a complex medical condition are bullied by it. When we seek out help from those whose job is it to help, nothing happens.
We are literally left to our own ingenuity to find a solution, even a temporary one. This of course assumes we have the strength to do so. Most of us are already so fatigued by the ongoing medical needs of our children, that when the epidemic barges in, our own health and safety become at risk.
When we as parents are in such a state, the risk for medical error in caring for our child escalates. This stress is one of the epidemic's side effects that goes undocumented.
What is this epidemic?
An enormous deficit of available home care nurses.
Pediatric nurses are even harder to find.
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Levi did not need nursing care at home until he was 2 ½ years old. It was determined at that time his need was only at night. PCAs (personal care assistants) could support his needs during the day, due in part to the presence of myself or my mother in our home. At night, his complex medical and fragile nature escalated, thus the need for nursing care.
We were with nursing agency #1 for five months, during which they provided us with not a single nurse.
The four nurses we did have over those five months, were all personal friends whom we were able to get hired by the agency to care for Levi. They each came on board for a short period of time in anticipation that the agency would soon provide adequate staffing. They never did.
Within those five months Levi was terribly sick with 4 rounds of pneumonia and 7 lung infections. His life hung in the balance each day.
The stress of caring for Levi and his then-newborn younger brother was overwhelming. My dear mother (God bless her) filled the gap on some of the nights we did not have nurses. Coming in the wee hours of the morning to care for Levi, going home for a nap, then coming back to help again during the day.
It was not until Levi's health slowly stabilized, the fog began to clear, and we were able to see the situation for what it was. I had no idea we were all caught within the vortex of this epidemic.
A fellow parent suggested we enlist a second nursing agency to see if we could find sustainable nursing staff. So we added agency #2. At first they were a God-send. Within days we had two nurses who were able to commit to working with Levi ongoing. It was a major transition for us to have “strangers” in our home caring for Levi while we slept. It didn't take long for meaningful relationships to develop as they provided excellent care for Levi and my gratitude for the opportunity to sleep again at night was tremendous. Soon after we dropped agency #1.
For a year we all enjoyed this rhythm.
One of the two nurses got a promotion and the search began for a replacement. That was 18 months ago.
Agency #2 has not been able to provide us with a second reliable nurse.
Once in a while a nurse comes along that we are able to train, but inevitably within 1-4 weeks, they are gone again. A switch to daytime nursing. A family emergency abroad. A scheduled hip replacement. A need for more hours and longer shifts. A move to a nursing home position.
All of which leaves us with our one remaining night nurse who comes 4 nights a week and does the job of three people. This is when the epidemic stands on our front steps and threatens to come in.
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In Minnesota during the winter, people slip on the ice and are seriously injured.
In a flash of a moment, it happened this week to our one night nurse. As a result she is not able do to any lifting and therefore not able to come and care for Levi.
The epidemic just barged in.
With no nurse, we parents we are left to pick up the load, staying up all night to care for Levi's complex medical needs. Being a child who has very limited movement, he needs assistance with something as simple as clearing his airway.
Knowing this, you just can't lie down and sleep next to your child.
Coincidentally, my husband has been wrestling with a respiratory illness for 3 weeks. This has not only debilitated him, but also made it impossible to care for Levi. It would be just too easy for Levi to get sick too, and that easily puts Levi in a life-threatening situation.
Nursing agency #2: they have been of no help.
They can't even find a second nurse to come and train with our one nurse to help fill the gap within this emergency. I have asked for a nurse to come and work alongside our night nurse for two nights so we as parents can get some sleep. I just need someone to come and do the lifting. Still, no help.
Given the nature of our nurse's injury this could go on for weeks.
I have been awake for five consecutive nights caring for Levi's needs. Add all the rest of life that happens during the day, and it is overwhelming. My exhaustion is beyond that of a newborn's mother. I am concerned about Levi's safety as well as my own. I simply can't get injured or sick.
Yesterday, I questioned if it was safe for me to be driving.
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I know from talking with other parents who have nurses in their home that everyone is short staffed. When the epidemic hits, we are often faced with taking our child to the ER because their condition can worsen. Given how medically complex our children already are, hospitalization becomes almost inevitable. This becomes expensive for everyone. And it is certainly more expensive than having in-home nursing to begin with.
There then can become a problem with getting our children back home, because there is not adequate nursing care available in-home. This is already being seen within the newborn population in our metro area. We parents with older children know this. Some of us then struggle with the question of if to hospitalize our child in the first place.
My friends in rural Minnesota describe the situation as being much worse. One friend's son had double hip reconstructive surgery. He went home with his parents and no available nursing staff. There simply wasn't the option to have nurses because their aren't available in their area. Dad had to use his accumulated vacation time to stay at home and tag-team with mom caring for their son's recovery. This is on top of the child's already complex medical conditions.
I recently attended a meeting hosted by a home care nursing agency to educate parents on what can be done legislatively to promote change. As I sat in the room full of parents and listened to their stories, I was astonished. Some of the parents who are 20+year veterans in caring for a child (now adult) with a complex medical condition gave a perspective I can't see with a 6 year old child. Many have seen the cycles of challenges over the years and they have never seen it as difficult as they do today. Some were not sure what the road out will look like. It was at this meeting that I realized that my situation is a part of a larger epidemic.
I know from talking with professionals in the field that this epidemic is rampant. I have spoken with four nursing agencies in recent months and all of them report a shortage in nurses. Particularly pediatric and night nurses. They say this shortage has been the norm for quite some time. None of them would even add Levi to their case load to help fill some of his weekly shifts because they already knew that they could not provide.
Some say the shortage is as high as 45%. This means only 55% of the need for in-home nursing is being met.
Some nursing agencies talk about significant discrepancy in pay that they are available to offer home care nurses, in relation to what hospitals can offer. Because many of our complex medical children are on Medical Assistance, there is a legislative cap on the fee they can charge. On the low end this gap is a $10/hour difference.
Some agencies talk about the hiring relationships with pediatric hospitals as being part of the problem. Two years ago, hospitals were generally not hiring new nursing grads. Those grads signed on with home care agencies, got specialized training and experience, within 6-12months reapplied to the hospitals and got hired. Today the duration with a home care agency can be as little as 3-6months. Many new grads are now finding work directly with the hospitals.
On a broader community level, consider the number of Boomer-age adults who are beginning to need nursing care. The growth in this will only continue to be exponential as the population ages. The children of Boomer-parents who can't care for their parent directly or find in-home nursing, have the options of retirement communities, assisted living, and nursing homes.
No such options exists for parents of children with complex medical conditions (and for good reasons).
When I talk with pediatric professionals they say the number of children needing in-home nursing is also growing. Some have expressed that it will only be a matter of time until our pediatric hospitals will be full with complex medical children, who with adequate nursing staff, could be cared for at home.
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It is with consideration of all these layers that I am calling the situation an epidemic.
It is an unseen epidemic, unless you are someone providing direct care to a child with a complex medical condition (parent, guardian, nurse, physician, agency, hospital...) It is going to take all of us working creatively and collaboratively to find the road out.
This epidemic is already costly. Many of the factors and expenses are going undocumented.
We should not wait until the hospitals are full for us to address this epidemic. By then lives will have been lost. Expenses will be extreme. Difficult decisions will have to be made.
Difficult decisions about children.
As a parent being swallowed up today by this epidemic, I don't have the strength to do much more than write. And pray it doesn't take me and my child out.
May the Lord be my refuge again tonight... Psalm 91
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