One families journey with EA/TEF




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Medically Complex Kids and Transitions/EA/TEF Awareness and Education/Tracheomalacia/Laryngeomalacia

The youngest one is about to transition to a new school…BLESS it. The one that gets more bumps and bruises than any of his siblings because being little is just hard, the one that required the most attention at birth by spending more than 50 days in the NICU

My once very medically complex baby – will have a big transition next month to a new school. OH BLESS the dynamics of transition. Will he feel confident enough to play with the other kids? Will he have fun? Will he thrive in his new environment or will this become a season of grief at drop off? Will he bond quickly with his new teacher? Most of his ok-ness will come from watching me handle the change. Bless it. Am I throwing off anxious signals? After four kids and too many transitions to count, this too should go well – and probably will – but for the mom’s out there wondering about how to do this gracefully…let me know if you figure it out.

I did take a minute to help write a note from Rhett’s perspective (age 2 with EA/TEF and a super hyper mom) who happens to think the best way to make friends is telling the cashier at Kroger that he and his brother killed a polar bear last night. And then while we pack up and leave, he waves goodbye with his signature here

I have something to share with you….

I was born with EA/TEF (esophageal atresia/tracheoesophageal fistula) which basically means I was born unable to swallow or breathe safely due to my internal pipes not forming correctly.

Thankfully, he also gave my parents and doctor’s wisdom and a good direction for surgeries at Arkansas Children’s Hospital and everything is fixed.

But because my food pipe and windpipe have been stretched and stitched, they don’t act or sound the way normal ones should.  The term my mom uses is tracheomalacia and laryngomalacia, which are big words for floppy pipes. 

So I think when God was planning my life, he also gave me a spirit and hunger like a lion, so it is true that he provides for us what we need to survive!

One families journey with EA/TEF

You may hear me cough, or growl or bark – a lot.

My mom is super hyper about my health (and will be super sensitive to yours as well)and she is also mom to my three older siblings and two pets, which only means she’s really good at knowing when things require a code red alarm, a Doc McStuffin’s band-aid or simply a kiss.  Since I am big and strong enough to come to this school with you, it means I stay healthy a lot longer between illnesses and can safely run and tumble now!  If I do catch a cold, you may see me use a machine called a nebulizer – it’s sort of loud, but it’s just a fancy way to help me breath easier.

My cough could be from pretty much anything.

A bad swallow, a bad inhale or exhale, drinking my milk too fast or just holding myself wrong.  It feels like anything can cause my body to react by coughing hard.  My cough comes and goes and is not an indicator that I am sick.  Good thing my parents know the difference between a good cough and a bad one – and believe me – the bad coughs always keep me at home.

My cough is loud – super loud – and sounds a lot like Croup (but is indeed NOT a croup infection).

My pipes are not very strong or firm and they do not naturally use proper motion, so when I cough the sound vibrates like a whoopee cushion.  This causes lots of sharp looks from Gritty Grannies or people who don’t know me, but I promise, you will get used to it very soon.  We may even have fun because I have learned to use and control my sound to play dinosaur, monster, cars or trucks (watch me above in the video).  I never mean to scare or startle you – so it’s perfectly ok to tell me to stop when we are playing.

One families journey with EA/TEF

I have a few large scars –

During the summer you may get a peek at my scars on my belly.  A couple of them are from my surgeries and one is from my old belly tube.  It’s perfectly ok to ask me to see them – I can show you and tell you that they do not hurt me! I am unique in my own way, and I am happy to be your friend.

You can get hold off my Mum on this support group which has Surgeons, adults living with my condition and Parents.

Meet My Mum.

One families journey with EA/TEF and the NICU at ACH.

Meet My Family

You can also see a youtube video of my NICU journey below