The tapestry of the life of a medically complex family

Archive for January, 2013

So Happy It’s Tuesday…

Awakened this morning by a blinding headache at 4am. Stumbled to the kitchen for Advil, water… hoping to stave off the approaching migraine. Feeding pump went off just before 7am (chose the rate based on sleep need…) and I realized I would need more meds when I brought the twins to use the bathroom. The nausea had started. Zofran to the rescue. Lying down for another hour before opening eyelids halfway to begin the nebulizer rotation across the Super 3.

Mid-way through the first neb, through the pillow I have held over my face, I hear a banging on the door. F$&@. SO Happy It’s Tuesday. No nurse and it’s the oxygen delivery guy. Struggle to unlock the door and move the oxygen tubing so he doesn’t crush &/or soil it while he removes the 100lbs tanks. Not quite the vision in my fleece PJs but we always accept these deliveries because they NEVER come back, nor allow for a different day.
While he’s struggling down the stairs with tank #1, the phone starts blaring to add to the throb in my temple. Pressurized tank delivery day as well. I ask if he will also bring the new nebulizer machine we have been waiting for a month to get… he says he’ll call back. Blaring phone AGAIN- to tell me the delivery guys have no order but he’d like to bring it if I can get through to the DME. DME gives me tge run-around, claiming they’ve had an order with no approval since NOVEMBER- ahm, the “order” came from our NP who is the insurance liaison… But sure, I feel like SHITAKEs so I’ll call their approval person- who is the ONE person in this chain that ALWAYS does her job… 2 phone calls later, I am hoping that we will see a nebulizer today to replace the one that died months ago- and the backup that died today.
After my first cup of coffee, and with the “dimmer” feature on my phone, I can type & begin to function. Thanks for sharing the start to a fairly typical day… Can’t wait for tomorrow. 🙂
Gotta go get breakfast into some kids.


Socratic Sunday January 27, 2012

“Coming together is a beginning; keeping together is progress; working together is success.”
– Henry Ford












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.

Morning & the Quiet Side

Sitting in the quiet that is early morning at my house
Lifting the first cup of the pot of coffee I will drink today

I should be making peanut butter formula
I should be readying the medications I need to start soon to be ready for OT by the time she arrives for my son

Instead I am sitting
Sitting & savoring
& working to quiet the questions that run through my head
To quiet the spasms that grip my neck
To quiet the “should be”s

For 5 minutes a day,
I need the quiet


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.