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Timmy Joins the Decannulation Club

As much as PHS loves providing home care nursing for patients so they can thrive at home, we also really love it when patients improve so much they don’t need us anymore– a milestone recently reached by three year old Timmy, who is the new proud owner of a naked neck after being decannulated in July.

A steep learning curve

After Timmy’s parents found out at 13 weeks gestation that he would be born with Down syndrome, they began to prepare for a child that would have additional needs.  When he was born at 37 weeks and a collapsing airway affected his flow of oxygen, Timmy needed a trach to be stable. He also had a feeding tube placed to provide his nutrients after having issues with nursing.

“The trach was a huge decision for us – I don’t have a lot of medical background and was very uncomfortable, not knowing what to expect,” remembers Kara. “But it’s been a great thing for him and saved his life.”

Timothy_feeding tube awareness_250Timmy came home at 11 weeks, dealing with feeding intolerance issues had him in and out of the hospital – during his first two years it’s estimated he spent around 200 days in the hospital. However, his mom, Kara, believes two factors have been instrumental in keeping him healthy despite such complex needs – top-notch medical care (including his amazing PHS nurses), and receiving optimal nutrition through his feeding tube, thanks to the implementation of a blenderized diet once he was old enough to eat real food.

“He gets the healthiest diet in the house,” jokes Kara. “We’ve dealt with so much medically that goes so far beyond Down syndrome. But he’s just become Timmy.”

Since those first weeks, Timmy has encountered a number of ups and downs that have ultimately brought him to the goal that his family, caregivers and providers have been working toward for a long time – a successful decannulation.

Second time’s a charm

After a decannulation and laryngotracheal reconstruction in August 2014 ultimately resulted in Timmy having to be re-trached due to life-threatening pneumonia, the past year was spent working to get him strong enough to be prepared for another effort. And when that opportunity arose in July, it was a success. Timmy is now trach-free, and dealing with coughs and secretions like a trach 3_250

Looking forward, all efforts are focused on keeping Timmy healthy through the fall and winter viral season and watching for granulation tissue that could potentially develop (he needed emergency surgery in August as a result of this tissue forming and blocking his airway). But there are fun things ahead, too!

“Our family has not been able to travel together since he was born, so we are looking forward to doing so once he is cleared for travel by his doctors,” said Kara. “We hope to take a trip through Make a Wish in the spring.”

For now, Timmy will focus on climbing at the playground, reading books and dancing to the Wiggles, just like any three year old.

Originally published: September 22, 2015

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