The tapestry of the life of a medically complex family

A Complex Medical Xmas Letter

Dear Family & Friends:

We are all alive. This is no small feat & worth the headline. I realize it’s been years since an update and you all deserve to know this much. I have thwarted many valiant attempts by these kids to cease breathing or eating- they shall not succeed under the vigilant watch of myself, our occasional home nurse & their skilled specialists.

Trachboy contracted a post-op pneumonia & plugged the cuffed trach that was stenting his airway repair. Our night nurse & I successfully bagged in an airway neb, suctioned and returned him to breathing. He came close again the next day but we kept ahead of it. In the last year, he has only had ONE pneumonia & another course of antibiotics to thwart a developing respiratory infection. This is his best year ever as far as respiratory infections.

Trachgirl endured a month of feeding intolerance. She lost 10% of her body weight and dipped dangerously below her first percentile curve. With the help of her medical team, I added diluted formula to her hydration mix until we could get her back on full-strength formula. A GTube was placed a few months later so we now have the tools to fight her back to the 1% someday. She is frequently able to eat meals all day and we supplement calories with formula through her GTube overnight. After a year and a half, she has yet to measure weight back at the 1% but she’s close & has recently gained in height so we’re hopeful.

Youngest has done the best these last few years- gaining in height & weight & mostly following along a small curve. She has had a laryngeal cleft repair and was able to wean thickened liquids without recurrent pneumonia for the first time. We are attempting to adjust airway meds to lessen her daily interventions and will hopefully progress there soon. She has had some intermittent & unpredictable blue spells this year. After a work-up by Cardiology, she has been cleared of it being a new cardiac concern (πŸŽ‰) and doctors presume it may be Vasovagal. Hopefully the frequency lessens and she continues to be pneumonia free.

It has been a tiring few years for Mom. She gets an average of 3-hours per sleep interval, occasionally getting 6-7 total broken sleep hours a night. We have had our reliable day nurse move on to another job. It has been a sad and difficult time of transition. Medications and necessary treatments still happen but fighting with medical equipment providers, insurance, getting MD follow-up or follow-through are all more difficult to regularly keep up. Fortunately our night nurse does 2-3 nights a week so there are occasional night’s sleep & showers. Getting out to the grocery & running other errands have fallen away so big bro & some friends/family occasionally help out there (as well as thank goodness for Amazon Prime!). It’s great that youngest can run in for some items when we run completely out. (Unfortunately people mistake her for much younger so sometimes she has to field invasive repeated questioning while trying to check out with milk & celery… πŸ™„) During peak flu season we will look into delivery to avoid exposure.

This year the kids have enjoyed learning to play the hand bells and Xylophone/bells for some simple songs. They have practiced some on guitars but not made much progress there. Their love for music has motivated Youngest to begin writing songs to sing/play along with Trachtwins, friends & cousins. This coming Friday, a generous friend has scheduled delivery of a family piano (& an armoire for Youngest to have as a closet). All 3 are excited to practice and learn to play recognizable songs.

They have continued homeschooling and are completing lots of age-grade level work with some things adjusted for skills behind or ahead. They continue with their “Cute Kids Book Review” on Youtube and committed to posting at least monthly- December reviews posting soon! We have had incredible practical science opportunities from learning more about each medication they take to pregnancy ultrasounds and delivery by our breeding guardian dog. Raising a litter of puppies, delivery to 6weeks has been a childhood highlight. Incorporating weights, measures, graphing, observation, noting changes/development, assessing personality/dominance traits- it has been a wonderful addition to regular homeschool activities.

Trachgirl still has her sights on a career in medicine- she still wants to be an ENT surgeon (ORL- Oto-Rhino-Laryngology) – OR a falconer, or both. She has begun practicing skillful painting with acrylic paints. Her painting style is much light her drawing: realistic, exacting & detailed.

Her skill far exceeds her experience. I hope she continues to love & create art throughout life.

Trachboy has continued to research and be fascinated with space, astronauts & all-things to do with rockets. His challenges are more noticeable as he has aged but his ability to remember factual information is still an impressive skill. He has learned to ask for additional information when what he’s read is confusing or he doesn’t understand a word he’s read. He, too, has enjoyed music & art this year. His art piece for the sculpture show was detailed and well-received. He still creates much art that is cartoon-style or a caricature, often incorporating motion and action into his scenes. He loves to create comics and has used that skill in a sketchbook for the Brooklyn Sketchbook Library project, as well as a book he co-wrote with his sisters. He has begun to paint 🎨 and is creating planets & outer-space scenes in his art.

His piece “Pluto Loves Us Back” was his parting gift to our day nurse when she left.

Youngest has sailed into middle school age with good skill. She has struggled with written projects while being better able to verbalize her stories or thoughts than produce things written with appropriate capitalization and punctuation. Her love of writing original poetry has not been stymied by writing standards. Her farewell painting included her original poem about our “Wonder full world”.

Her art has a “gist” of realism with a focus on the big picture over exacting details. It has been a pleasure to watch her art flourish while blending her love of poems within.

There was a free week in VT again this year. Touring the Ben & Jerry’s factory, hiking near a waterfall, dancing to their first hearing of Boston on Vinyl, & seeing good friends were highlights. So many generous people have impacted our lives that we have been able to pass on gently used books, clothing & gear to help others. We are hoping for continued health stability in the year to come, as well as health, prosperity & love for our family & friends. Take good care.

Happy New Year!

Surreal

We sit at the end of an era of social progress and medical care access. I look in fear at the road ahead. If the changes in our healthcare since Nov 9th are any indication, we are on a downward spiral from access and availability toward a wasteland littered with the pages of equipment denials. 

We have had a good few years healthwise: no hospitalizations, adequate equipment & supplies, support from friends when supplies were delayed. We had home repairs & the start of a changeover of the electric so that we might one day use the second floor while still needing significant electric medical equipment. We have had one familiar nurse stay with us and she is reliable & skilled in the assessment & care of Trachgirl & Trachboy. Their hours were gouged while the insurance tried to dump us but I have been lucky not to have too many nights where no sleep was possible due to my kids’ sickness. It has been 19 months since I have had a nurse at night & we have survived. 

Beginning last month, the insurance has again tightened what they will provide for the necessary medical supplies for my kids. They attempted to cut our supply order by half- without regard for how much of the supply we might have on hand or consideration that we might, in fact, use MORE than they provide. I had to go through supplies line-by-line and justify the need for EVERY item- from a roll of tape to the single box of suction catheters. In going over supplies this month with their new “control the order” person, I discovered they had reduced them even further than last month- though the assistant on the phone does not think that is possible. 

Tomorrow we will receive the supplies and next week I will waste some time talking with the case manager and fighting for the two extra pieces of tubing and the other 5 trachs we need annually not to run out for weekly changes (you know, cuz 4 per month = 48/year and there’s 52 weeks + a MINIMUM of ONE emergency- removable airways sometimes become obstructed. You HAVE TO change them out to breathe when that happens.) The person coming to my home will also attempt to MINIMIZE the “skilled nursing” tasks necessary to keep my kids going. Technically it should be a look at the medical aspects of their daily care and a calculation of hours. These hours should cover the intensive care aspects of the day so that I get the opportunity to sleep some nights & “just be Mom” other times… The doctors who provide medical care to my kids see the need for MORE nursing, this woman thinks I am “too competent” & should therefore not have help. What bureaucrats don’t know is that providing ALL the medical care robs my kids of access to me as “just Mom”- the last time I read to/with them before bed? I’m pretty sure I read something on Xmas Eve as a special treat because my “everyday” is so exhausting I don’t get time to do it other nights. 

Anyway, I didn’t write tonight JUST to complain, I wrote so I would remember what we have today even WITH the recent reductions. I have a caring, competent nurse who comes 29 hours a week to take care of the medical needs of my kids- paid for by my kids’ Medicaid-program health insurance. My kids sleep with sterile water mist compressors running through circuits we change weekly to ensure bacteria and mold growth are kept to a minimum for their health & safety. Oxygen is bled into the set-up continuously for my son & “as-needed” for my daughter via oxygen tubing from large liquid tanks in their room. Their tracheostomy tubes (airways) are changed out weekly to keep colonized bacteria from taking hold and becoming the next pneumonia. We have adequate suction, oxygen & oximetry supplies for the time being. Our equipment is in good repair, including the nebulizers and portable pressurized oxygen so we can go out and play & enjoy “living” healthy. 

My son has a GTube in the correct size that is changed whenever the balloon or valve fails from frequent use. We have enough supplies currently to keep up with the need to change tubes, extensions & adequate feeding bags, gas relief bags and a working, rechargeable feeding pump. We have a grant that covers some part of the ingredients found in his homemade formula and hydration blend. My daughter has enough formula on hand to have some daily until the insurance authorizes the approval to getit again (we hope…).

My 3 kids albuterol, atrovent, hypertonic saline, saline, pulmicort, duoneb, prevacid, nexium, miralax & dulcolax, epipens and iron, as well as antibiotics are covered right now. We have the equipment & supplies we need to give them these medications. For ALL of this, I am thankful. I will be hopeful that their coverage will be defended and secure going forward. Nothing is certain right now but I have to hold to this small hope.

Peace & health to you & your family. I will continue to fight for mine. 

Visual Space

I had to move a toy there. I took the fire station and moved it to the spot where his dog bed was until this morning. Each time I pass through the study, sobs escape, but having the visual space filled helps…

On May 3, 2002, our pup came home to live with us. 8 weeks old, 11 lbs, a 9th birthday present for my Eldest. Jake was so tiny we had to put boxes into his crate & cover them with a blanket to make the space feel comforting. He fit in immediately, playing & growing alongside his pal.

His first few years there were multiple moves but he was happy to be where his pack was, through every transition. 7 years ago we moved to our current home. He went from being a stay-at-home-alone dog, to a dog with a house full of kids, with nurses & me at home except for hospital overnights.

My oldest finished high school & went to college out of state. His visits brought increased excitement & unending smiles from Jake. After a visit, Jake would run to the kitchen with every next arrival to see if it was his buddy back again.

Jake turned 12 in March. Things were harder. Transport was difficult. He had mostly wonderful days, and some that were frighteningly awful. Until yesterday, bad days coincided with difficult travel, vet visits, an injury. This past week he looked tired. This past week he had less energy. Yesterday he did not eat and was very winded crossing a room.

He held on. He smiled at me every time I pet him. He smiled when I gave him my eldest’s pillow and looked to the back of the house. He was holding on to see his boy.

This morning was the hardest but we were together. Jake rode peacefully in the car- even sat to look out the window smiling. His breathing was ragged but he wagged his tail. He smiled and gazed lovingly at us. And now he’s gone.

He was a wonderful & sweet & happy dog. He provided comfort & comedy & joy to everyone he knew. He snuck his Petco Christmas presents from piles in the closet. He leapt off a 4′ patio edge into my sister’s pool. He was my loyal & ever-present friend for over 12 years. I miss him. I ache. I am thankful for EVERY minute.

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2 Years & STILL Screwed

Two years I have sacrificed my health, any semblance of life outside the playroom, having clean laundry on any kind of regular schedule. Averaging 4.5 hours of sleep a night, but never consecutive. Clawing at the soil on the edge of our cliff, trying to hang on. Eating oatmeal 2 meals per day while feeding the kids what they need for health & growth.

FINALLY I refinance. FINALLY I find a grant source to support some of the ingredients for my son’s whole food formula. And, in the last week, finally finding nurses for night time so that I may possibly learn what it is to sleep 5 hours at a time… With the 3 shifts I have on 2 weekdays, I might be able to grocery shop with just ONE vulnerable kid in tow…

And the insurance is dropping hours from my nursing schedule. If I have overnight nursing, I can’t have day shifts. If I use day shifts, it’s back to no sleep… WHY is it that we never make headway? Forget winning, how about having the opportunity not to FAIL?

πŸ˜₯

Memorial Day Modified

Often families of a child with special healthcare needs will celebrate holidays or family events in ways that are different from others. My family has 2 children with trachs, one on full-time oxygen, & another who has severe asthma & heat & exercise intolerance. These health characteristics change the way we celebrate but do not lessen participation- different, not less.

For Memorial Day, we spent most of the day indoors, away from the heat & smoke from our neighbors’ fire pits. We grilled steak on the Foreman & made salad & veggies on the stovetop. We paused during our day to learn about the purpose of the day & talked about our family veterans to honor their memories.

It was a fun day, with many of the features of traditional celebrations throughout the USA. Just as your celebrations differ from the neighbors, we did it our own way.

Hoping your Memorial Day was a fun, family event. Thank you to the Veterans who have sacrificed for our freedom.

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TheUsual

By the time I have the help of another nurse, it will have been 129 hours since the last covered shift. The kids are on “sick plan” – 8 scheduled nebs a piece, with additional nebs for break-through wheezing or congestion. 29-30 nebs every day, on average.

Tonight, for the first time in 2.5 weeks, all 3 are getting oxygen saturation reading of 99-100%. Maybe I will be able to drop off to the “regular” of just 6 nebs/day.

5+ days. 150+ nebs. Our last time trying ‘baseline’, my youngest spent half the night at 89…

It’s exhausting but extra nebs is better than going in. Whatever this is, I want it knocked out of the park. A couple more nights, some really good days, maybe Monday.

Write

There are reasons I haven’t written –
None of them good.
Each of them valid
In their own esteem.

Not sure WHEN –
Or if I’ll return –
HOW?

I have been thinking.
I have been introspective.
My journey continues.

The challenge. The joy.
The angst.

We are near healthy,
Never well.
But whole & safe.