Tuesday, April 19, 2016

An Update on Brodie's Epilepsy Study

Poor Brodie, he's been in hospital now for 9 days now and they still haven't been able to get all the information they want about his epilepsy.

He is so distressed most afternoons and is desperate to come home. In fact, sadly enough, he has wished he was dead. Of course when he told me that I phoned the hospital within a few minutes and spoke to someone on the nursing staff on his ward and told them exactly how he was feeling. They needed to know so that they could encourage him, soothe his nerves or whatever else they needed to do to help him.

I'm not too sure how they helped but Brodie has not said anything like that again & that was Saturday afternoon. The staff did unhook him from all the wires for a while and let him have a shower, something he hasn't been allowed to do since Monday morning before he was admitted. I know he felt a lot better after that.

He has all these wired glued to his scalp so that his brain waves can be recorded. He is on 24/7 video monitoring. When he has a seizure there is a box, you might be able to see it on the cupboard behind him with a black button, that needs to be pressed and that time stamps the video. There is also a yellow button on the wall, you can just see it behind all of those wires, it kind of looks like a light switch. You hit that button when a seizure starts as well. It alerts the nurses and within 5 second 4-5 staff members come running in to the room. 

This button is what's called a ceretec button. It's actually the name of the injection that will be given to Brodie BUT only if the seizure occurs during office hours. The reason it can only be done then is it's needed for a SPECT scan. Now the scan can only be done during 'office hours' as there is no staff available before 9 am or after 5 pm. 

The sad thing is Brodies seizures seem to occur any time from 1 am to 6 am. Far too early. The ceretec injection lasts only for 3 hours. You can see the problem now can't you? I am finding it very frustrating that there is no technician on call. You would think that with something as important as this, when you know that seizures are completely random, that there would be someone who can be called in to perform the scan. Seriously I can see how Brodie is as upset as he is.

Poor Brodie has 5 more days before he can come home. I know this may sound horrid, sad, shocking BUT I have been praying for Brodie to have a seizure during office hours. At least up until 4 pm because if it's too late they wont do the scan either AND they wont give the injections on the weekend because there is NO staff to run the scan.  

I feel like I am rambling on here. Brodie wanted this study done. Both Mark and I believed that he didn't need to do it but he insisted. I just hope that the doctors gather enough information. This is all in the hopes that surgery may be an option down the road.

I have to admit though, that we now know two parts of his brain is affected by the seizures. To be honest I cannot remember which ones but I believe that explains why he has two forms of epilepsy. Tonic clonic and temporal lobe. The doctors are not sure exactly where they start from or if one part starts and it jumps to another part of the brain and fires it up.

I just hope that all of this stress and frustration gives the results and information that is needed. My poor boy just wants to be home and I don't blame him!

Post a Comment