Sam goes into hospital in a few days for video telemetry.
For those unfamiliar with the term, it basically means he will be on a hospital bed wired up to an EEG machine for up to four days and four nights, with video cameras on him 24 hours a day to record physical movements/manifestations of seizures while the EEG tracks his brainwave activity.
The purpose is to see if the Doctors can identify where in his brain the seizures are coming from and to see if those areas correspond to the abnormalities that were identified in his MRI a few months ago.
In itself it is a non-invasive procedure, however the prospect of trying to entertain a five year old, with a cognitive age of three to four years old, for four days, while he can’t get off the bed, does not fill me with any great joy!
We have wanted for this to be done for over three years and it has been a massive battle to finally reach this point, involving three neurologists, differing opinions and me having more than a few hissy fits in our primary neuro’s office!
We have to know.
However there is a very good chance that it will raise more questions than it answers, and I’m not sure how I feel about that.
We feel relieved that we’re finally getting the necessary tests done, but very anxious and apprehensive about what the results may show.
We are torn between wanting the results to show that another therapeutic option may be available to him, coupled with fear that it might and the knowledge that any decisions made would not be easy.
So, tonight I have made sure the iPad is fully charged and I have packed the chargeralong with art materials (paper, pens, etc.) in the hospital bag ready to attempt to entertain the little chap while he does his thing.
I am now going to try to get some sleep, as it may not come easily this following week!
The portable activity kit. Fun therapy at home or on the moveFind out more