Toby is a bright, industrious and curious little boy with cystic fibrosis (CF) who is now 7 years old. He has also had some issues around needle phobia and procedural trauma. Toby’s mum, Melissa, shares his story and how they are working with KKIND (Keeping Kids in No Distress) to manage his anxiety.
MELISSA: “Toby was first in Princess Margaret Hospital (PMH) at 2 days old for a double hernia operation. We then found out about CF when he was one month old. His first tune up was from 7-9 weeks old. He needed a pre-med before surgery and he didn’t like the taste, so he spat it out. Nurses had to hold him down and forced it into his mouth. They held his nose shut so he would swallow.
When he was 16 months old he needed his second tune up. He was held down again for the pre-med as he vomited up the first dose. Then when he went through to theatre he needed to be held down with the mask on to get him to sleep.
Toby had many experiences like this. When nurses needed to do Tobramyacin levels they tried pricking his toes whilst he was asleep. He would wake screaming and be difficult to settle. This lead to many phobias.
It was difficult to manage his phobias for many years, and during this time, he was in and out of hospital. Many tears were shed by both Toby and myself. Then he had two and a half years without an admission.
He recently required an admission to get rid of a stubborn cough. We met the KKIND team and they have been amazing!! They introduced both Toby and myself to many options to help with scary procedures. When Toby had his Tobramyacin levels taken they gave him a buzzy bee to hold. This vibrating device sends signals to the brain, confusing it, which lessons the pain felt. Amazing!! They also help give control back to Toby. This admission has been the least stressful so far. Toby now feels a lot less fear around needles and feels like he was listened to.
Toby is very independent when it comes to his treatment. We encourage him to take control and follow his routine. This is important because he knows that he must have physiotherapy to clear his lungs. He understands that if he didn’t do physio he would be sick a lot more often and that the damage done is irreversible. Our Cystic Fibrosis WA (CFWA) home care worker has been instrumental in encouraging his independence. She is patient with him and I appreciate the break I get on the days she visits.
We want to thank CFWA for their support. Also, we want everyone to know about KKIND and realise what is available to help our kids and avoid negative experiences in hospital. It’s as easy as asking your nurse to contact KKIND and they come to you. Anything that makes hospital easier on our kids is a blessing”.
More information about the KKIND program can be found here.
Article from Red Magazine, Edition 1 , 2018.