The tapestry of the life of a medically complex family

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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”…


Night Nurse Day

With my trached twins & youngest with breathing, GI, ortho & neuro challenges, you can imagine my house is a pretty busy place. The twins are approved for a lot of nursing hours but on average I get 20hrs of coverage. There are school vacations, special training at their “day job” & a host of other reasons a nurse might miss multiple shifts a month.

Since July, I have only met with one nurse referred by the agency. He was “miraculously” unavailable for ANY shifts I wanted filled & only ones that were partial & inconvenient (come after & leave before meds…?) as soon as our 4hrs of training him had ended. I have not had a single night of nursing since late July. It is now late January.

For me, it wouldn’t seem so bad if it wasn’t for the fact that my kids have been sick for FOUR FULL MONTHS of that six months. They went on “sick plan” the first week of August & stayed on it through October- with 10 inpatient days in September for all 3. They took antibiotics & long steroid tapers & finally seemed “better” the first week of November.

After about 2.5 weeks of regular meds, “sick plan” was reinitiated. More steroids after an ER visit for one, antibiotics for 2. We stayed home for Thanksgiving, unable to pause nebulized meds longer than 4hrs apart.

Maybe things are not clear to everyone but “sick plan” is a MINIMUM of 2-3 nebulized medications, 3 times daily. The minimum is 8 nebulized medications per child, times 3 children. (When a nurse comes, s/he covers 6 for 2 of the kids, max). Most of this fall, the kids were on additional nebs- every 4-6 hours for bronchodilators, and 2hrs for normal saline nebulized in between for the twins during the day- and some nights but then we went inpatient. There are the regular oral meds too & additional doses of steroids and antibiotics.

And there’s cooking & cleaning & reading & laundry & bedtime & cuddles…

Yah. Exactly.

So when a nurse came last night- because our 28hr/week day nurse has been out sick half every recent week… Some friends thought I’d fall dead asleep & not wake up until he was ready to leave. No. Such. Luck.

After 6 months of 20-hr days, there is no “instant off”. I actually had a HARDER time sleeping than usual because I wasn’t in the same room as the compressors & alarms & cacophony that usually lulls me into my 3-4 hours/sleep a night. Last night I got less than 3.

Hoping for a nurse on Friday…

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.

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 Day Before Again

Originally I published this piece the day before my friend’s son’s first birthday after his death. This week has been one of tremendous loss in my community of friends and another friend is trying to get through a 10th birthday- that isn’t. My heart is still touched by these many children. Here is my message to E’s Mom:

SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.

Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to, or will, experience this pain.

I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.

I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace. Please know we love you and will be celebrating the life of our special friend tomorrow.

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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