The tapestry of the life of a medically complex family

Archive for the ‘Environmental Challenges’ Category

Don’t Look Away

I know you see & want to look away. I know we all struggle. I know asking for help is looked down upon. I also know you rarely get what you don’t ask for.

So I am asking. I am not asking you to sacrifice your children’s college fund, grocery money, bus fare to get to work. I am asking for what you can help with- donate the amount of a cup of coffee ($1 @ McDonald’s, $2.25 @ Starbucks). Would you give up a cup of coffee for them?


I added to my family through adoption. Yes, the twins had trachs. Yes, they were all preemies. But they were supposed to be trach-free & essentially healthy by the end of preschool. Just as you parents entered parenthood with a set of expectations, I took on the care of my twins, then youngest, as any parent might.

As with all well-laid plans, things failed to go as planned. We celebrated birthday #7 with 2 trachs still in place. My “Christmas present” this year was that doctors were closing in on the diagnosis which would tie together the ongoing complex medical needs of 2 of my 3 younger kids: 1 of 2 life-limiting, degenerative genetic conditions affects them- but not the other child. She will likely continue to grow more and more healthy as she sits beside me watching her sister and brother struggle more and more.
These life events are par-for-the-course. But I need help to make our life more livable as we continue this complex medical journey. Repairing the aged electrical that inadequately meets the needs of my kids’ life supporting medical equipment is imperative & well beyond reach. Moving the washer-dryer upstairs so that it is accessible on the 4-6 days/week when I do the 20+ nebulized medication treatments of the day on my own. These are the things which would CHANGE MY FAMILY’s LIFE. Do you have spare change to change my kids’ lives?




As parents, we all do our best to protect our children. We use outlet covers, remove knobs from gas stoves and install carseats so tight paper cannot slip beneath the base. This morning my 5-year-old bumped her head trying to surprise me by re-making her bed because I told her we were going to do that this morning. With all we do, we can't keep them safe from every bump or bruise- fortunately Momma's magical kiss was all that was needed to heal this one.

Being Mom to nearly 7-year-old twins with trachs, and a medically complex 5.5 year old, there are things worse to worry about than a bruise on the forehead or a scrape on the knee. A simple cold in another child their age could be an illness severe enough to put them all on oxygen, develop into a severe pneumonia, place us inpatient across 2 rooms at our children’s hospital. Our last inpatient stay was Christmas Eve 2011, as my youngest began requiring oxygen at home to keep her oxygen saturation within the acceptable range.

The way we avoid the hospital is to work to avoid contact with people who may become ill and share that illness with us. From September through May every year, we live in “Lockdown”. It is the primary reason I homeschool. It is why the OT & PT see my kids first, and cancel when they are exposed to known Flu or RSV or if they are coming down with something or “feel a tickle” in their throat.

I realized in describing it to our neurologist that people don’t understand the lengths we go to as a family to avoid illness. They see kids who appear medically frail but who have infrequent hospitalizations, who maintain health throughout much of winter. They see them cone to clinic wearing masks, in their strollers, with a Mom who requests exam rooms be wiped down in her presence. They have no idea that this is the tip of the iceberg.

My twins with trachs turn 7 on Saturday and have been to the grocery store less than 7 times. They stay home with a nurse or I shop online to avoid exposing them to a grocery cart. My youngest sits in the cart still, but only after I wash every surface she might touch with wipes rated to “kill the flu virus”. We have not been to a gymnastics class since my twins’ first summer home- the summer we spent 2 weekends of every 4 inpatient.

With family parties in winter, we canvas family members the week prior to see how everyone is feeling. We cancel if anyone sick is planning to go- and almost NEVER attend an “in-law” inclusive party- even in spring. We celebrate our own holidays and birthdays with small gatherings at home- including one set of cousins who are well one week, making time when the others are well to celebrate again.

Vigilant? Yes. Extreme? No. My children have a history of adjoining rooms in more than one hospital in year’s past. Being inpatient 10 days after Thanksgiving, 8 days after Christmas, the week after a visit from the birth family aunts an uncles- a hard lesson has been learned and etched in our experience. “Lockdown” is the way we ensure we can be together as a family, home & safe from the illnesses contracted as a result of an inpatient stay. My kids continue to experience a rich life of playing in snow, riding bikes and building blanket forts. They just do it ‘different’, not ‘less’.

“… For it goes without saying.”











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.


If there were not enough reasons for us to stay mostly inside this summer, we can add another: cellulitis. Youngest got bit by a bug on her arm and it swelled up quite a bit pretty fast. By the next day, about half her forearm was swollen and there was a red patch 2.5 inches by 1.5 inches. It was itchy and she complained of pain but no fever and it seemed pretty stable at that size so we watched it on Friday. Saturday morning, she awoke a bit crabby. She sat down to eat breakfast and complained about her arm. The swollen area had doubled in size and the redness was spreading down into her wrist and up to her elbow. Made it to the Saturday pedi hours and got her on antibiotics, which finally seem to have gone to work as of today.

Good thing we have her on Vitamin D…

Summer Bummer

Here we are nearing 4pm on a day I have 15 hours of nursing. You might think this would be the day I get tons of things done, get my groceries, do something fun. Well, today I was supposed to meet a new nurse- but she cancelled. Then we were considering going to a museum on the coast- regardless of how anxiety-provoking that is…
While getting the kids ready to go, the oxygen man arrived. We delayed un-dressing & re-dressing until he concluded his 45min process of removing, refilling then resetting the twins’ oxygen tanks. As I began redressing my Youngest, I stepped down onto a large dog toy, lost my balance & went flying onto my back. Another hour gone trying to ice & make sure I could keep moving & keep the headache at bay that threatens each time I land akimbo.

Then there we are at lunch time. 40 minutes for my feeding disordered Trachboy to eat a half cup of yogurt. 15 minute break at the table so we can get peanut butter formula in him so he has calories & more fluids for mid-day. Then I am tired. The idea of packing a car with suction, oxygen, portable oxygen, transferring the twin stroller versus the triple since there are 2 adults & my back is tweaked… The idea of going ANYWHERE complex medical family/ trach-style EXHAUSTS me. Sure there are errands I need to run- the packing & re-packing’s not worth that.

So the nurse & I sit & try to come up with ideas. The movies? No rated G movies are out right now. Bowling? ICK! Community shoes, seats, computers & balls? No thank you, never. The bookstore? The nearest one: “Leather & Lace” does not really seem like my sort of family adventure… B&N is 25-30 minutes away in 3 directions. Sure, it’d be fun, but I can’t afford to buy books this week while paying off the electric & gas that’re overdue & “on notice”.

EVERYTHING outdoor is out. The heat today is “wilting” for a ‘normal’ family. Add trachs, reactive airways, preemie lungs & the added bonus of “heat intolerance” as low as 70 degrees & every outdoor activity is out until September. Cooler temps at the beach? Sand, water & crowds are not our family friend either.

No wonder we rarely go anywhere. Fall is definitely better when it gets cool- but then there’s flu & RSV to avoid. Not really having a good day.