The tapestry of the life of a medically complex family

Archive for the ‘Nurse’ Category

Home Nursing Racket

Those who follow my blog know there are blessings & challenges with regard to home nursing when you have a child with complex medical needs who requires skilled nursing care. The blessings are few, but GREAT when they are found. I am so very thankful for the one nurse I have who brings skilled care & love to my children the only 15-29 hours of care I have covered each week. My children are approved for 133 hours per week each. I have 29 covered AT MOST.

None are night hours. I spend way too much time awake every day (19-23hrs, depending) to get anything but the basics & medical care done for my children. We love & laugh each day, but it is medically focused since I have no help.

Last week I met with a 2nd agency trying to get more help- and maybe some sleep. Family Lives claims a family & patient-centered philosophy, a “designed by parents” history. My experience was one of the many “worsts” in the history of my children with trachs being home.

The person assigned to us arrived at my home 15 minutes early for our meeting. I asked her to come back at 9. My kids were still at the table eating breakfast-the table where we would be meeting- and I was on the phone fighting to get a feeding pump cord replacement with our equipment company, who had no record we HAD a feeding pump. As they knocked my SIL had texted to tell me that our much loved dog’s “pup-mate”, who had been owned by my Mom, had died overnight. Bad timing. When you are coming to someone’s house for the first time, be on-time, not early.

They decided they would go & come back around 9:30. (It was supposed to be ONE person, she brought a second unannounced.) They opened their visit with judgement: “WOW! That is a BIG dog!” says 1. Says 2: “we let our first dog get really fat, but we aren’t making that mistake with our new dog.” … How do you respond to THAT? ‘Welcome to our home’???? Yep. It started off “fun”.

Then the 2 proceeded to pepper the usual questions back-and-forth: diagnoses, treatments, responsibilities… Then SHOCK to find out my son was a “full code“… uhm, he’s going to be 8. Yes there is an unclear metabolic disorder result, but letting him die, not really part of the plan right now.

Then they continue with release forms & are dismayed at my lack of trust for free access to any & all doctors whenever they want. They have a right to contact a doc about an order, to connect with my pedi, I have no responsibility to give them free access to EVERYONE at ANY time. That’s how care plans get screwed up by people too lazy to do the work. They can absolutely have my as needed permission to contact a doctor, but not cart blanche.

Then the women commented how cold my kitchen was. We had been sitting in an 80 year old kitchen addition, off the back of a 200yr old New England home, which is not incredibly well-insulated, on pretty much the COLDEST day in January so far. I told them yes, my kitchen can feel cool- 62 degrees or so, but that our heating temps are dependent on our poverty & my son’s severe heat intolerance.

They ask about what I want a nurse to do if there is an emergency when I am not home. I tell them I want her to call me. They think I do not understand. With odd glee, #2 says: No. An emergency. You’re not home & your kid is CODING on the floor… Given that I tend to go as far as the grocery (1/4mi) and NEVER before I trust a nurse completely (3mos. or so)… Call me. And if she HAS to call 9-1-1, then do that next. They were surprised. I am sitting here wondering WHY they ASKED if there is only 1 answer… If they have a policy, state the policy & inform, don’t ASK the family.

On their way out, they asked about my children’s birth family, making conversation. I point into the living room where individual pictures of their older sisters hang next to photos of my children. They make a face looking at the giant pile of boxes in our unused living room. We received our supply orders during my recent 2 week span without a nurse, while my 3 kids were sick, BETWEEN recycle days. I explain yet another thing they judge & say my goodbye- HOPING they find less judging nurse staff to help our family.

Yesterday #1 calls to inform me that they REFUSE to take our case on, BECAUSE OF THE TEMPERATURE OF MY HOME. There is no discussion. Just a “refusal” of our $800,000 annual nursing contract. I explain to her again the costs ($600/January) and the fact that my son suffers breathing fatigue & respiratory distress at temps above 70 degrees. #1 says: I understand. But that makes it an inappropriate environment for our staff.

I think she needs to look up the DEFINITION of the word ‘understand’.

They came into my home & found a family hanging on to the knot at the end of their rope. And they chose “judgement” over “support”…


Today’s LAST Nerve


When my nurse comes in coughing, I ask her to wear a mask, and she says:

“I think I got this from your (trached) son. Your kids are the only sick people I have been around.”


She lives life in a world where the cold my kids have is a sniffle, that cough in the grocery check-out, just a TRIFLE.

It only looks major here because my kids get, & hold onto, & SUFFER from colds because of their CRAPTASTIC respiratory status.

WHY do people who are intended to be our HELP, also HURT?

Going to make coffee. And mutter in another room.

Home Nurse “Support”

In a world where things are working as they should, a home nurse would be a support to the family of a child with complex medical needs. While we have come across some of the GREATEST gems in home nurses, the majority are more liability than support. Agencies approximate a screening process, occasionally provide some basic training, but rarely know the individuals they schedule and send off into the homes of some of the most stressed families with the most vulnerable children. These “professionals”, who should provide support, training & relief to families, more often contribute significant additional stress and lack many basic skills.

I have a wish list:

1. Screen nurses for basic skills (e.g. lung sound assessment, trachs are AIRWAYS, GTubes are for feeding…) in addition to running their license & finger prints.

2. ASK the family what hours each day they would like covered. Perhaps develop a way to determine which shifts are MOST important to have covered for the family you are trying to staff.

3. Be honest when describing the skills a nurse brings with them- have they NEVER worked with a child with a trach before but you chose them because they had the priority hours available & seemed to learn quickly in in-house training? Truth works.

4. Teach your employees what it means to be a professional: be on time, give notice when you need to cancel a shift or change schedules, treat this position as a JOB.

5. Assess & then train basic skills that a homecare nurse may not have acquired if this is their first job- e.g., check order, check dose, check label BEFORE administering a med.

6. FIRE nurses who deserve to be fired rather than recycling unskilled or dangerous nurses to the homes of other families when an incident occurs.

7. Provide successful nurses with payment for helping to train new hires for the case they are on.

8. Support families by acknowledging that their nurse preferences (education, certification, experience, non-smoking status) are reasonable when this person will be IN their home & child’s play or sleeping spaces.

9. Acknowledge & respect the level of experience of the patient’s family members. Require your nurses to do the same.

10. Work to be understanding when a family is abrupt, angry or scattered. The stress of staffing their home, as agency staff or a nurse, is nowhere near as stressful as being the family member of a child whose medical needs are severe enough to qualify for home nursing services. Allow families to re-group & provide excellent customer service- when you do, there is no one who appreciates it more than us.

The Best of Nursing

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.

Nursing Undermined

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.

Happy Happy Birthday #6

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.


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