The tapestry of the life of a medically complex family

Archive for the ‘Environmental Challenges’ Category

A Beautiful Day

I see the pictures-

I watch the updates-
Displays of wealth

The wealth of health, the posts abound.
But for chronic ill, challenge astound.

The sun & warmth is just a tease
Sailing asthma on the breeze

Constant nebs, more o2,
Lack of energy, muddle through

Love all 3 babes, hate their strife,
While they live the medical life.

-GK, 4-12-2014

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”…


Homeschool Choice

To the doctors and others who judge my decision to homeschool:

It has come to my attention that there is some confusion about the reasons I homeschool my children. You are familiar with the medical reasons (trachs, illness susceptibility) but may not be aware that my choice is also based on the “whole child” needs of each of my children. In addition, it is in part supported by my knowledge of and experience with the US public school system’s structure & variability. For the purpose of this note, I will focus on what is right about homeschooling for my children.

Homeschooling allows for individualization of curriculum and instruction for each of my children. It allows my gifted & talented learner to stretch her abilities at her own pace, my middle ability learner to make age & grade level progress, and my challenged learner to receive appropriate instruction to move skills forward more rapidly than would be possible in a large group setting. It allows me to address developmentally & academically (MA Curriculum Frameworks) appropriate activities within a topic that captivates interest & keeps my kids motivated to keep moving forward in all curricular areas. Each of my children is learning at a good pace, demonstrating the success of their homeschool program.

With regard to social skills, my 3 children span less than 2 academic years in age. Unlike peers enrolled in traditional schooling who spend close to 5 hours a day listening to an adult or completing individual tasks at their desks, my children spend much of each day discussing interesting topics, playing interactively & encouraging each other’s learning. Although they are ‘familiar’ play partners, there is little predictable about their daily play choices & interactions. My child with an autism spectrum diagnosis is encouraged, challenged, instructed and drawn in to dynamic, sustained social interactions daily. Because they are supervised by both nurses & myself, they are regularly exposed to different levels of structure & independence, across different activities. In addition, local cousins (there are 4) visit regularly to participate in play as health allows.

Every day of the week, each child has structured & adult-directed learning activities, individually & in a group. Each completes familiar learning tasks independently, with new curriculum, on multiple days a week. They are read to, read silently & read to each other nearly every day. They do yoga, play ball games, swing, slide & run about daily. Because of their heat intolerance & health, they do tend to spend more time inside than out but have balance beams, an indoor swing & a loft slide for active indoor play as well. Homeschooling allows for spontaneous “field trips” to the beach, historical sites, birdwatching, the aquarium & movies.

As their health improves, medical status changes &/or I return to paid employment outside the home, I will continue to homeschool. I have the skills & intention to homeschool through high school or until such time as one of my children makes a valid case for their individual transition to a private or more traditional school environment that we can afford. Homeschooling is a family value that far exceeds any medical reason to do so.


Dear Distant Eyes Beyond Our Bowl:
We’re different, special, but stop patrol!
Your judgment hurts us more than too
Our lifestyle choices for health do.
Our lives are not desolate spans
With moat around our modest manse.
We bake, we play, we go to beaches.
We sing, we dance & Momma teaches.
We SKYPE. We see. We swing on swings.
We venture out in health or springs.
We visit family, play with pets,
Eat rest’rant salad, point out jets.
In winter: shovels, snowballs, sleds,
Skiing, snowforts, cozy beds.
Building, learning, having fun-
Our family life a VALID one.
View our year in picts below-
Maybe one day try & know
Your view is cloudy- narrow best-
STOP the judging- give it rest.












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.

Blueberries 2013

Although it’s rarely easy, I work to give my kids age appropriate experiences. Today we packed up oxygen, suction, cooling vests and the wagon to head off to the blueberry patch. Tav picked nearly a half hour before needing the cooling vest & to sit in the wagon. The girls fared better, Keva sat to pick but moved between rows pretty well considering. Adrien even handled being buzzed by a bee.
Tav needed suction a few times and an oxygen increase to 1.5Lpm to keep going (seated) but he ate more than the girls while there in the bushes. Lunch was delicious with the fresh blueberries in our homemade yogurt. Enjoy the photos.







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