The tapestry of the life of a medically complex family

Archive for the ‘Nursing’ Category

I know how lucky I am

Every day we struggle financially. Each day can be a physical marathon. But everyday I look at my Fearsome 3some and my college-attending teen, I know how lucky I am.

My oldest arrived at a time that may have been “less than ideal”: I was between Grad School Graduation & my first job in a new city- Philadelphia. I signed up to be a control on a “Core Temperature in Depression” study, recruiting non-pregnant females for $75 to swallow a silicone bean & wear a monitor. Imagine my 24-year old surprise! It was a roller-coaster but the answer to my dream of becoming a mother.
My son’s arrival was a flurry of NICU docs, worried nurses & labor-enhancing drugs. He arrived via vacu-assist (appropriate give his surname) and blinked at everyone like: What’s all the fuss? I’m fine. Parenting him was easy & carefree as I look back- but seemed every bit the struggle of every parent as I went through.

When he was 12 years old, my other mothering wish came true: he would have siblings, a brother & a sister, and they would join us in a new home I was able to purchase. His big heart and caring nature were so evident as soon as his brother & sister arrived. When his youngest sister came home, his heart swelled even more. It was amazing to watch & I could not ask for a more clear indication of parenting “success”.

The twins & my youngest may struggle with medical needs, feeding & energy but make up for it in the breadth of their capacity to love, endure & enjoy. They wake each day & immediately check-in with each other. Any separation (like taking my youngest with me to the grocery when a nurse is here with the twins) is predicated with a group hug & concludes with a reunion worthy of a Disney production.
Right now they are sitting at the kitchen table drawing plans for a Leprechaun Trap and sharing their ideas with each other. Yes, there is bickering over who has the box of crayons, which idea is best for the trap, what a Leprechaun will do if they don’t wear green… But most of the interaction is give & take of ideas, punctuated with positive encouragement of “that’s a good idea!”

Medical needs aside, I may be the luckiest mother in America.
(See what 4.5 hours of sleep does for a person?!)

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.

10 Things about Home Nursing

… That I wish could be learned by reading a list & not having to endure it.

10. Home nursing often attracts the dregs of the profession. Families count narcotics, ADHD meds, pain pills- consider a lock box to which you have the only key.

9. Home nurses may misplace, damage or ruin things in your house and never admit to having done so.

8. Home nurses are NEVER on time and rarely go a month without missing a shift.

7. Home nurses can rarely identify a trach or GTube from an array of medical equipment and plumbing supplies.

6. Home nurses bad mouth families as often, if not more than, families express disdain for their performance.

5. Home nurses rarely have the assessment skills to determine when medical follow-up is needed.

4. Home nurses rarely have any skill which they can “instruct the parent” to support the parent’s ability to better maintain their child at home.

3. Home nurses rarely LISTEN and COMPLY with medically sound advice or procedures which have proven successful for a child in the past, if this information is shared by a parent.

2. On a rare occasion, your family may truly be blessed with a professional nurse who is a shining beacon of skill, caring and support to a family with a child with complex medical needs.

1. If you find your beacon, HOLD ON TIGHT: support them, be flexible, make tea, make coffee, celebrate birthdays, celebrate Tuesdays, bake cookies… Keep looking & sorting through the rest until you find them.

Nurseoem

I meet the nurse & interview
Decide if training to ensue

I schedule training then I wait
Anxious breathing won’t abate

I train the skills, ID the parts,
Teach assessment, talk of heart

I take deep breaths and let them try
Too oft attempts will go awry

The hours are lost, my children pay,
Its rare when nurses last and stay

I give up comfort, sleep, career,
It seems no else can do it here

Keep standards high. I wonder lot:
Home nursing worth it? Think me not.

Best Laid Plans

Ah, the plans we make. One of my goals for the coming year is to write here more often. I love to begin a new year with a beautiful group picture of my smiling kids. I had plans for sledding and lunches with my family & the birth family.

We all know what happens with plans, especially when kids are involved. Add complex medical needs, family gatherings, multiple kids- multiples! Well, some days it’s a wonder that ANYTHING gets done.

No group photo got done until tonight but here’s the reality of my new year’s:

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And one who worked SO hard NOT to smile…

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“Parenting” as a Team Sport

Parenting, in any situation, is a tough gig. Parents work hard to create the environment they want to nurture their child to becoming a thriving, capable adult. This environment includes encouragement, love & guidance or discipline and parents work hard to balance the structure to meet the needs of both (all) parents involved in raising their child.
In my home there is only one parent- and you might THINK that makes things easier- except for a few things… Because my kids have complex medical needs, they have nursing care provided at home & in the community during many of their activities. You know how Dad may have a rule that’s SUPER important to him & he may feel like he has clearly defined that rule- until Mom is out with him at a cookout & lil Johnny is flat out performing “the act” while Mom laughs about it with her friends?? (or vice versa) Well, envision THAT times 5. Why 5? That is the number of people, in addition to me, who directly supervise my kids on a weekly basis.
I agree that what the nurses do for my kids is not “parenting” them, but they DO “toe in” to that “pool” I’ve crafted which is supposed to bathe my kids in enthusiasm, kindness, grit & motivation. Consistency is just not a word which describes this life.

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