The tapestry of the life of a medically complex family

Archive for the ‘Twins’ Category

10 Things about Home Nursing

… That I wish could be learned by reading a list & not having to endure it.

10. Home nursing often attracts the dregs of the profession. Families count narcotics, ADHD meds, pain pills- consider a lock box to which you have the only key.

9. Home nurses may misplace, damage or ruin things in your house and never admit to having done so.

8. Home nurses are NEVER on time and rarely go a month without missing a shift.

7. Home nurses can rarely identify a trach or GTube from an array of medical equipment and plumbing supplies.

6. Home nurses bad mouth families as often, if not more than, families express disdain for their performance.

5. Home nurses rarely have the assessment skills to determine when medical follow-up is needed.

4. Home nurses rarely have any skill which they can “instruct the parent” to support the parent’s ability to better maintain their child at home.

3. Home nurses rarely LISTEN and COMPLY with medically sound advice or procedures which have proven successful for a child in the past, if this information is shared by a parent.

2. On a rare occasion, your family may truly be blessed with a professional nurse who is a shining beacon of skill, caring and support to a family with a child with complex medical needs.

1. If you find your beacon, HOLD ON TIGHT: support them, be flexible, make tea, make coffee, celebrate birthdays, celebrate Tuesdays, bake cookies… Keep looking & sorting through the rest until you find them.

Socratic Sunday

“Not life, but good life, is to be chiefly valued.”
– Socrates

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Best Laid Plans

Ah, the plans we make. One of my goals for the coming year is to write here more often. I love to begin a new year with a beautiful group picture of my smiling kids. I had plans for sledding and lunches with my family & the birth family.

We all know what happens with plans, especially when kids are involved. Add complex medical needs, family gatherings, multiple kids- multiples! Well, some days it’s a wonder that ANYTHING gets done.

No group photo got done until tonight but here’s the reality of my new year’s:

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And one who worked SO hard NOT to smile…

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Chasing

My kids are 6.5, 6.5 & 5.2 years old. They have never been to a parade. They have seen Macy’s parade on Thanksgiving & a bit of the one’s on New Year’s but have no real concept that everyday people actually go to & SEE these things in person. Having preemies that include twins with trachs, and a 5 year old with her own respiratory issues, fall & winter & early spring are times spent hunkering down away from germs, versus being out attending events. Group activities like parades or fairs never make the cut as “worth the risk” when thinking about my kids vulnerabilities.

As we began talking about Thanksgiving, my son remembered the Thanksgiving parade we have watched the last few years. (We are not a TV-watching family. TV is an ‘event’ in our home- so fairly memorable.) He asked if the parade was going to happen on Thanksgiving again- perseverative question cycles are a daily occurrence. I told him that it would be on and since that day about a week ago, he has checked in about 3 or 4 thousand times on the topic. (Thank you Autism)

I checked our town website and found out WE have a Veteran’s Day parade & that it was early Sunday afternoon. It happened to fall between all the multiple medical treatments that make up our life as a family with 3 complex medical kiddos, and it seemed reasonable to delay lunch to make it happen. He & his sister’s were excited to be going to see their first parade.

We drove downtown because my kids fatigue levels are way too high to make a half mile walk. By the time we parked, packed the stroller, got my 2 weakest kids buckled in, it was very near time for the parade to start. Altho it was just a short walk to the firehouse, it took us until 1:01p to get there. Yep. ONE MINUTE after the parade began. They saw the veteran’s on motorcycles and the fire engine that were the tail end of the parade. We tried to catch up- I put my other child on my shoulders so I could walk briskly while pushing the other 2. They saw the backs of our high school marching band…

Basically, my kids ALMOST saw their first parade this weekend.

But they enjoyed themselves anyway.

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Sandcastle by the Sea

My kids have been to the beach a few times. Sand and water are not a great accompaniment for a trach so we typically go only after it has rained- to make the sand wet and less of a flying powder. Also, my kids have put their toes in the ocean but we give it plenty of distance because we know how each wave can be bigger than the last. Today we went to the beach to remember our friends who have died- to “send off a wish” as my youngest calls it. To remember and to hope for peace for our friends’ families, while creating some peace for our own.

Today was perfect beach weather for my kids: cool enough & cloudy enough to keep crowds of people away, moist sand after a night’s rain, cool damp air to enhance the moisture of their breath into their lungs. We parked the oxygen tank, found “wishes” and threw them into the sea. The waves covered the bottom of their boots and frightened Trachboy, so we retreated to the wet sand and built my kids’ first ever sand castle. It was a wonder to them and magical for me- I’ve never felt that comfortable with all that sand and water with my trachees. We needed today’s magic to bolster us through the week ahead. Hoping the peace stays with us a while.

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A Second Helping

This weekend we got to go to pick apples again. It was a different event than the peaceful, leisurely outing of last year. Apparently, every weekend is a festival weekend at the apple farm. This weekend was also their community craft fair which made things EXTRA BUSY.

The highlights were the 3some enjoying their first “tractor ride” on a trailer pulled behind a red tractor – the DUSTIEST experience of my trached twins’ lives- & picking a GIANT bag of apples to bring home for making Gallettes and drying to eat for snacks. We will be needing to add some recipes to our repertoire in order to use all these up! Feel free to add some recipes in the comments- I can usually modify things to meet our grain-free diet. Enjoy our photos.

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