This is Jordan’s story
Jordan is a lively 3 year old boy has been struck down with Childhood Central Nervous System ATypical Teratoid / Rhabdoid Tumour. He has had a brain tumour removed and underwent chemotherapy and radiotherapy but still is as bright as a shiny new penny.
Jordan was referred to Speech and Language Therapy in June 2016 when he was admitted to Sheffield Children’s Hospital with a neck swelling, unwell, weight loss, ongoing cough and changes in his voice.
He was diagnosed with an atypical teratoid rhabdoid tumour (posterior fossa extending through jugular frame and into his neck). He then underwent surgery to remove the mass from his neck, followed by chemotherapy and radiotherapy. As a result of his treatment he suffered pneumonia and was ventilated on intensive care for a prolonged period of time.
His treatment also resulted in a bilateral vocal cord palsy and an unsafe swallow. Jordan has a gastrostomy and receives all his nutrition via this. Duo to his vocal cord paisy and unsafe swaiiow Jordan has a cuffed tracheostomy.
The cuff refers to the balloon around the tube. This is there to stop anything going down into Jordan’s lungs, for example saliva or vomit, and causing a chest infection.
As Jordan is breathing in and out through his trache and not his mouth, he can need suction.
This means that Jordan cannot not produce sounds with his vocal cords so in order to express himself fully he needs to use other means of communicating and developing his language and learning such as Makaton signing and a communication aid.
Jordan has completed his treatment and can now plan a transition into nursery and then school. He will require support for his tracheostomy and his gastrostomy.
Eating and Drinking
Jordan has an unsafe swallow. This means when he tries to swallow food or drink goes into his lungs. All his nutrition is via his gastrostomy. This is hard for Jordan and it can be hard being around other people that are eating. If Jordan wants to be involved in snack as a server the that is great but we need to be mindful that there might be times when his feelings change and he wants to have something like his friends. As his understanding develops he made need things like social stories to explain this to him and he will always need to be supervised if there is food around.
Understanding of language
The last time Jordan’s language was assessed he was understanding two key words, including verbs. His understanding of language has been affected by long periods of illness and hospitalisation. Comprehension deficits and slower processing speed can also be sequelae of having a posterior fosse resection. This means the development of Jordan’s understanding of language will need to be monitored.
In practical terms, he may need instructions breaking down, he will need time to process instructions and would benefit from instructions being repeated.
Jordan can communicate some two key word messages using signing but often communicates using single signs. His expressive language has been affected by long periods of illness and hospitalisation. It has also been affected by having a cuffed tracheostomy however, if we use Makaton signing and his communicate aid this area of his language should develop and he will be able to use longer phrases and then sentences.
This area of his communication is affected by his tracheostomy. His vocal cords don’t move and this is what creates the sound when we speak. Some children can have a speaking valve with a tracheostomy, this directs the outward airflow over the vocal cords but requires that they can move. Unfortunately, this is not an option for Jordan as his cords do not move.
This means supporting Jordan to use his communication aid and his Makaton signing is really important for him to communicate his needs, socialise, develop his expressive language skills, learning and independence.
Jordan has a communication aid to support his expressive communication. This has been provided by the Barnsley Assistive Technology Team and their staff have supported us with how to set this up for Jordan and encouraging him to learn and explore the aid and use it to convey messages. We have used the CODES framework to set targets to help Jordan use his communication aid.
Children who have had posterior fosse surgery can have problems with short term memory so it will be important to give Jordan lots of opportunities to use his aid so that this will go in to his long-term memory which is often less affected.
While Jordan was in and out of hospital and then after having time with his family on holiday it was not always possible to offer regular sessions to support him to use this. This will be a key area for Jordan to develop at nursery.
Jordan is a very sociable boy but his opportunities to socialise with his peers have been reduced by his prolonged hospital stays.
His social interaction will also be affected by his speech so it is important that we incorporate his communication aid and signing into his day and plan activities where he can use his aid with his peers.
Learning and memory
Children who have had surgery for posterior fosse tumours can have difficulties with attention, memory, processing speed and visuo-spatial difficulties. All these areas will need to be monitored and supported.
Speech and Language Therapy
Jordan’s Speech and Language Therapy will now be transferred to the Early Years Community Speech and Language Therapist who covers Wisewood Preschool. The therapist will liaise with the therapist at BATT to set targets and goals.