Some of our home nurses have been wonderful home nurses. These women & man have worked tirelessly to provide my kids the necessary medical care, caring and developmental support in the best of all possible ways. When my children first came home, they were 2- and then 3- VERY complex, fragile infants. At 15 months old, my twins wore 6mos sized clothing, their trach masks were nearly the size of their heads, and only my daughter could make sounds and crawl.
Nurses came into my home and were trained to change a trach in less than 20 seconds because my children could get no air in without the tube in their neck. They were taught to suction for less than 10 seconds and at a very specific depth, lest they collapse one of my children’s miniature lungs or cause more damage to the trachea. My kids were problem feeders, constant vomiters, attached to multiple pieces of medical equipment all day and these nurse came to work on the front lines of my kids’ medical care to help me keep them home, keep them safe and succeed as a family.
Who were/are the successful ones? The successful ones are nurses who have good, basic clinical skills. They can auscultate lung sounds and differentiate wheezes from crackles from rhonchi from a pleural rub. They know to count heartrate & respirations for a full minute with young children. They know to give a child a minute to cough & clear before heading straight to suction. They can watch a child at play in their fleece outfit and know their respirations are above normal and they’ve begun retracting- before lifting the shirt to count & see.
These nurses also have the ability to LISTEN. They take direction from the parent while following the orders of the doctors. They measure carefully when using a graduated suction catheter. They remember this is “home”, not “hospital”, so they take the time to play, to laugh, to sing, to enjoy. They follow through on exercises, strategies, procedures and activities that help the kids move forward in their development, while continuously monitoring and assessing their health status.
These nurses also have communication skills in the area of bringing information to families. They sometimes come with other experiences or discover a more effective way of doing something. They might have new medical information about a child’s diagnosis or information to share about a medication. They are able to talk with a parent without talking down to a parent. They give information that supports more effective care of the kids, better quality of life.
I have appreciated every minute of support from these nurses. I have worked to be sure they know how much they are valued. My children have thrived under their care & with their support. Many of these people have had to move on with their careers, their lives, but we still think of them often and cherish their support in this complex medical life.
Having twins with trachs provides challenges as well as joy. The joy of having them here & alive and thriving at their own level is ever-present. With that said, the care & upkeep is taxing physically, emotionally and socially.
In order to help with the significant daily hours of direct medical care necessary over and above day-to-day life of caring for any child/ group of children, doctors order nursing hours as a means of ‘support’ for a family. I have written about the perils of nursing. i have written about the intent of home nursing versus the reality. I have recently written about the need for seemingly COMMON SENSE to be written as an order for home nurses to be able to exercise a moderate level of such.
In response to the orders for COMMON SENSE to be utilized by nurses, our current nursing agency withheld the signed orders because they failed to agree with them. They worked behind the scenes to get the orders redacted without providing copies of orders they received into their office more than one month ago. Their first notification of receipt of these orders came yesterday as a copy of their refusal of these orders, with an attachment of “orders” that redacted orders they chose never to share with me. As always, our nursing agency attempts to undermine the family whom they are pretending to support & work alongside. This behavior is consistent across most agencies with whom I have worked and seems common experience across friends & family who have needed nursing in-home.
This agency has provided nurses without skill and experience and told me that the nurse has had both. This agency has provided nurses whom I have had REMOVED FROM MY HOME WITH A POLICE ESCORT due to threatening behavior and disregard for my request to leave. They have provided nurses unable to discern which medication should be selected to give while they have access to current orders, medication schedules posted next to medicine storage areas, prescription labels on the medication, as well as verbal direction as to what medication to provide.
I have found a few wonderful nurses in our 5+ years of having home-care nursing to attend to the medical needs of my children. Unfortunately, the good to great nurses I can count on less than 2 hands, while the terrible & dangerous nurses are so plentiful I do not have digits enough to count. Unfortunately, I am finding nursing agencies to be among the latter.
My twins celebrated their birthday today. They woke early and had a busy day of:
- Ice cream for breakfast
- Opening presents
- Testing new toys
- Playing outside
- Gettting reading to “party”
- Having pizza, cake & ice cream with FIVE of our wonderful Home Care nurses- including 2 who are no longer working here
- Getting to bed late
Let’s hope they sleep in in the morning. Be well & goodnite.
Sadly enough, so many of the nurses sent to interview or train here just don’t have them. The “nurse” scheduled to come tonight cannot assess lung sounds, determine if my kids secretions are copious or dry to the level of needing intervention; and when TOLD to intervene, she stands & waits for direction. There is a level of ineptitude that I have come to expect, but this bungling person has been “trying” to gain a skill for more than a month now.
I know that it’s time to let her go but, in addition to her lack of skilled nursing ability, she has no filter on sharing every minute detail of her life. Because of this, I know her family business has failed, her husband is only working part-time and she relies on the income from my home to keep a roof over their heads. In today’s economy, it is hard to discount the very real role this job could have on a person’s ability to avoid homelessness. This responsibility is far beyond what I signed up for when I accepted nursing support to maintain my kids at home.
This topic surfaces about every other week in my circle of parents with children with complex medical needs. The topic of home nursing is always laden with challenge & pitfalls. To be clear: there are wonderful and professional men & women in the field of nursing, some of whom work in Home Care. As a parent of children with special & complex health care needs, I learned quickly that the majority of home care nurses do not have the skill set necessary to function well & adequately care for my children in my home.
Some nurses we meet are aloof & “all business”. They stand in my playroom, paperwork clipboard in one hand, stethoscope in the other. They attempt to “provide treatment for” my children’s “conditions”- not “provide care” for my children. For these nurses, I used to try to engage them around playing with my kids- but it’s never worked. Now when I come across these nurses, I tell them it’s not a good match.
There are nurses who are too far in the other direction: all play & rough-housing (with TRACHS!?!?!)- while forgetting to assess respiratory status, follow the medication schedule, or feed the children throughout the day. There are nurses who attend to all stimuli as the same level of importance, and those who over-focus on one thing & don’t realize my kids are struggling to breathe… Nurses run the full range of competence in the home setting as in a hospital- but without direct supervision or ongoing training, other than the skills of the parent.
One of the more dangerous behaviors common in home nursing is sleeping while on shift. I have caught numerous nurses (more than 10), sleeping during an overnight shift in my home with my two trached children. Friends have stories of nurses napping with children during the day, or falling asleep in a rocker while a medically complex child plays nearby. The most amazing part of this for me is that people sometimes feel like it is “no big deal”- & by people, I mean some parents &, almost always, the nurses who do this.
Have YOU ever been paid to sleep? It’s a JOB. Nurses are paid to monitor, NOT sleep. I’d argue that, if “it’s ok for a nurse to sleep”, the child doesn’t need a nurse and insurance shouldn’t pay for one.
Alarms fail. Even skilled assessment can fail our kids. Using these in combination is always safest- and usually most appropriate for complex medical kids with & without trachs. It is, unfortunately, also common in my circles to hear about a child’s self-decannulation & death. Skilled home nursing support is essential to the success of families trying to care for their complex medical kids at home. No sleeping on the job.
Remember when you were 6 months into your first career? Did you feel you knew everything you could ever learn about your chosen field? Did you vocally attack people with significantly MORE experience than you- over stupid stuff like an oxygen tank not being fully closed ONE time you checked it?? This is the stuff I am dealing with with the newset nurse to join our homecare team.
A plethora of examples could be shared- like the above verbal “reprimand” of another nurse– the shift before she opened the oxygen tank herself, but forgot to attach it to my son’s trach, or TURN THE LITER FLOW ON! And when I discovered the error? A defensive: “Oh. I opened the tank.” How exactly does that meet my child’s needs?
This morning as I began to tell her about my experience last weekend with a significant heartrate drop, paired with oxygen saturation drop, she immediately went into “school marm” voice and told me I should “try repositioning him. It’s always worked for me so he has never dropped like that.” *pushed jaw closed with hand* before I replied that I was not ASKING for “help” about a situation, I was letting her KNOW what I experienced/observed. And to further clarify, I let her know that I am actually quite skilled in the care of my own children and she need not correct me when I am attempting to give her information about significant health events for my children.
I appreciate her feeling confident enough to help with my kids, but I am now leaning toward being put off by her over-confidence and inflated esteem. She has been here WEEKS and has no trach experience other than my children- frankly, her only other nursing experience is with a child with a GTube only- and her in-school clinicals. I am not sure I am going to be able to tolerate more from her. Home nursing is a blessing AND a curse. Some days more accursed than others. *SIGH*