The staff in general seemed really happy and comfortable in their workplace, everybody seemed to smile and say hello, this was very re-assuring for both Robbie and I.
We were called into a consultation room and we were introduced to Dr Lin (Consultant Paediatric Neurologist) Sarah Perides (Paediatric Nurse Co-Ordinator) Kylee Tustin (Clinical Specialist Paediatric Physiotherapist) and Lesley Baker (Senior Paediatric Speech And Language Therapist)
Initially Robbie was very quiet and seemed a bit phased by the people who sat with us, however all were very friendly and spoke to Robbie, and he soon relaxed and took part in the conversation.
Before we attended the Evelina for our first visit we had completed a questionnaire about Robbie and it was very apparent the team had looked very closely at the comments we had wrote, as several of their questions were based around the answers we had gave.
The team also got us to talk about the history of the condition, what had happened, what were his first symptoms, how had they progressed over time... all the way through this process notes were taken, and unusually they seemed to be taking on board every bit of information they were being given.
After an hour or so, I eventually stopped talking (LOL) and they raised any questions they had into what I had been saying.
Next Dr Lin went on to explain about deep brain stimulation and how the implant can help, this was done in an easy to understand manner, which helped immensely.
Next Robbie was put through a series of tests including walking, running, stretching, grasping exercises to name but a few... he enjoyed these, and the team made them a game, which Robbie enjoyed.
Next the team went in to quite a bit of detail about deep brain stimulation and what it entailed, giving a very clear roadmap on to the next step of the journey, which is a 5 day series of tests and assessments including goal setting for the DBS.
They explained how DBS can help young children with Dystonia in many ways - such as those set out below...
- Relieve Dystonia and associated pain
- Improve Movement Control
- Improve sitting posture and tolerance
- Improve sleeping pattern
- Increase Personal Independance, participation and self confidence
This is an exhaustive list, however above are the main areas I believe will benefit Robbie
There are a variety of tests planned for our 5 day visit at the end of July, and all areas were covered during this meeting, they discussed goal setting and have asked us to have a think about Robbie and what areas we would most like to see an improvement in, they covered when the DBS would take place, where the DBS would take place, who will perform the surgery (along with stats on success and improvement rates), what the surgery involved, what the stimulator would look like... (amazingly they actually had a stimulator and battery pack I could touch and hold, and they showed us x-ray pictures of implanted stimulators, and discussed how the surgery would be performed and aftercare Robbie would receive. This was a truly enlightening experience which helped alleviate a lot of fears, however also gave us some real food for thought...
Truly your head will be spinning from the amount of information that is given, however on the positive side they gave us an information pack which is very conclusive and covers a variety of questions you may well have. This is a great source of information and actually allows you to look at what was discussed and really gives you a chance to absorb some of the information you have been given on the day, as I/We have read over this new questions have come to mind, now though I am writing these down as and when they spring into my mind (thus this document will no doubt be read several times over before our next visit)
They also have a book for the child entitled "Tafi's DBS Story" this is a very child friendly book, very bright and cheery colours, however also covers the procedure in full, this will be really beneficial to Robbie in the lead up to both the 5 day visit and the procedure itself.
Overall trust me you have absolutely nothing to fear if you are going to meet this team, they are a truly fantastic group of medical staff, who certainly made us feel at ease very quickly, they certainly showed a real understanding of the condition - and most of all we knew we were in very safe hands, with the child's welfare being foremost in all of their minds.
PS... Robbie was happy with the information given... apart from the part where they said he needed to shave his hair for the surgery (Guess he will have hair like Dad's for a short while :)
No comments:
Post a Comment