Living with a tracheostomy

Recently the Brain Injury Hub team were invited to see a new airway suction pump being tried out.

Ellie, 3, was tracheostomy dependent at the time and used airway suctioning.

Her and her parents tried out the new machine which has been designed as an easier more manageable system.

Since then we have met up with Farah, Ellie's Mum who said it was great to see the progression in the design of machines.

Ellie had a bespoke trolley made to carry her equipment as she learned to walk. Here she is pictured with mum, Farah and dad, Tony

Here's what Farah had to say about the additional and often unspoken difficulties families of children with a tracheostomy have even when they know how to use the equipment. 

"Ellie was born with a severe genetic disorder, Di George Syndrome. One of the effects was respiratory problems. We’ve learned a lot since she's been born from how to administer medication to preparing and using equipment. But the sheer amount of pieces and the weight of equipment needed was often a barrier to going out. The suction pump we had weighed 5kg alone, then a 10kg ventilator, her feeding bag and an emergency bag for her trachy. So although we were at a level where we knew how to care for Ellie and administer her feeds and medication, I still really couldn’t really take Ellie out on my own without my husband because of all the equipment. It hinders independence. But at the same time it’s because of these machines that we were able to take Ellie out in the first place.
Ellie has now had her trachy removed
As Ellie got more mobile she had a customised trolley made by a charity volunteer to carry her ventilator so that she had more freedom. This was great as she could push her little pink trolley around with her. Ellie has recently had her tracheostomy tube removed and is in the process of getting used to this. But it really is great to see that there is continued progress in the design of equipment. It means life is made so much easier for parents who are in a similar position that I was.  It enable parents to become more independent to take their children out more with less help needed."    
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