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 (🎉) 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… 🙄) 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!


Comments on: "A Complex Medical Xmas Letter" (1)

  1. Justin Brown said:

    Great surprise in the email box!
    And, great family 🙂
    Merry Xmas.

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