Well, it’s 2:30am. My shift of the “Night’s Watch” technically ended an hour ago but given my second wind and tendency to want to be the family hero, I have not yet woken up my husband to pass the torch. Despite trying to take one for the team, my 5-year-old daughter will not give me a pass when she wakes up at 6:00am sharp. It all won’t really matter anyways, because we have to be out the door by 7:15am to get to work and school.
My almost 3-year old son, Rowen, requires a trained caregiver (parent) or a nurse to be awake and alert with him 24 hours a day because he has a tracheostomy and a ventilator to sleep. We are blessed with an incredible team of nurses who have become a part of our family over the past few years. But we are at the mercy of these five individuals who keep our household running. They are the reason we can go to work in the morning and lay our heads down on our pillows at night. The nurses have quite a bit of flexibility in their scheduling and the nursing shortage means that we depend on nurses choosing to pick-up extra shifts. So often our ability to access a basic human need (sleep) is dictated by whether or not Patricia is “on again” with her boyfriend and no longer feels like working Saturday nights or if Thomas needs to save some extra cash for his travel next month.
Our Thursday night nurse has moved to San Diego, so this might be what life looks like for a little while. Sure, the nursing company scheduling wizards will eventually come up with a loosely pieced together, short-sighted solution that might work for a month. But we will soon find ourselves stranded, once again, thankful at least for the month of Thursdays in which we got to sleep.
Night nursing coverage at the Hoffman House is essential. We also have day jobs. Our medically complicated child has a sibling who needs care. Intermittent sleeplessness is surmountable but chronic sleeplessness is impossible. It’s not that I don’t look forward to the occasional night shift. It’s completely quiet in the house, save for the sound of the ventilator gently pushing air in and out of Rowen’s adorable, peaceful, soundly-sleeping toddler body. Sometimes it’s the best time to get LEND assignments done, finally fold that mountain of laundry and maybe even watch something on Netflix that has been selected for viewing without any form of companion compromise. Like every other mom on the planet, I am fully aware that quiet time is to be cherished and so even when it is the middle of the night, I appreciate it.
But then comes the next day. Quite honestly, it’s even the days to come after that. I’m at work and someone is looking to me to make a decision and yet the words coming out of their mouth are just not adding up quite right. Or it is the weekend and I want to capitalize on the two short days a week that we get to spend as a family and so when the kids want to swing at the park, play at the pool, host friends for a bbq with a slip n’ slide and stay up extra late having a special movie night all in the same day, we say yes, but lack the energy to be our best selves in those moments. Those few “bonus” hours in the middle of the night end up impacting our ability to function in a productive manner for days afterward, let alone our ability to react quickly and soundly in the event of a medical emergency, which is essential for our son’s safety.
Sometimes it feels as if we are in a small boat in the middle of the ocean. In general, the boat is in good, working condition and we have two oars to steer us in the direction in which we need to head. Once in a while it gets a small hole that we are able to repair relatively quickly in order to stay afloat. For a while I thought that Rowen might grow out of his ventilator needs and that we would finally get to dry land and be able to roam freely again. But as time goes on and it sets in that this might be a lifelong journey of in-home nursing needs, it occurs to me that this boat is only going to endure more and more storms and at some point we might be slowly sinking in the middle of the ocean with no one left around to save us.
The reality is, we’re not the only boat out in this storm. There is an extreme nursing shortage across the country and most families like mine haven’t seen respite in months or even years. There is no babysitter option. No daycare. You cannot simply call up the grandparents or the neighbor and ask them to watch your child for a few hours while you catch up on some sleep or step out to grab some groceries. No one else is trained to understand the ventilator and respond to a breathing emergency that could save the life of your child. Forget working if you can’t find a nurse to staff your case. If you rely on Medicaid (which is likely because now you can’t work), the nursing agencies are less likely to staff your case because the reimbursement rate is half of that of individuals with private insurance. Families like mine are often boats in the storm, doing their best to stay afloat.
So what are your options?
The truth is that currently there aren’t many, and the population of children with medical complexities living at home is only growing in size. This is something Dr. Sarah Sobotka aims to fix through her research of the pediatric trach/vent population. This article points to some solutions that Dr. Sobotka has suggested to start alleviating this pressing issue that is directly impacting families like mine. And that handsome smiling boy featured? That is the boy who fills our boat with sunshine and cheers us on as we keep on rowing.
