The tapestry of the life of a medically complex family

GERD is SO Much Fun

After a late morning albuterol/ ipratropium round for wheezing break-through, my kids began playing ‘clinic’ with the teddy bears from their beds.

As they prep my son’s bear for a ‘procedure’, my youngest picks him up, places him close to her nose & SNIFFFFFS deeply. “He smells TERRIBLE!” she says before stuffing him under her sister’s nose & asking her to smell.

SNIFFFFFF goes my older daughter. “Ew! This bear smells GROSS! Smell it Momma!”

As she hands me the bear, I realize the leg is moist. Keeping it a good distance from my nose, I sniff lightly.

UGH!!! Vomit. The bear’s leg smells like VOMIT.

Thanks, GERD & overnight GTube feeds. Thanks very much.


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

Creating & Building

My Dad has been dead 18 years this summer. He had a favorite sweater I remember especially well. This week I made it into a house-warming birthday gift for my youngest brother. Favorite sweater, handknit by Mom, will soon become a coordinating item. I love to upcycle.


The kids had some adventures in creating this week too. There are Valentines to deliver and Tic-Tac-Toe to play. Trachs, kids & hammers…








My kids declared today:

“National Bitty Baby Day”

They have been playing with their Bitty triplets all afternoon. First they dressed them in matching outfits & “took them swimming”. Later the Bitty 3 dressed as ghosts using the doctor coats my kids have. Now the dolls are ill and receiving skilled medical care from my 3 little pros. So glad they are happily amused.


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”…


My three youngest sit talking at the table.

My son says: “When I’m big, I’m gonna marry Momma.”

I ask him why- what about me makes him want to marry me. He says: “Momma, you’re LOVELY!”

His twin plans to marry the son of one of our former nurses- because the nurse “will be too OLD to marry me when I’m grown up”.

My youngest states: “When I grow up, I’m gonna marry (my biggest brother). I’m gonna grow up … & MARRY HIM!”

When asked why, what is he like that makes you want to marry him?

Her response: “Bacon. He’s bacon.”

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…


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