Time to find a new way forward.
3 weeks ago, Juan underwent another long-term EEG and sleep study. This was long overdue, but have you ever seen the glue they use at an overnight sleep study? We still trying to get out the last remains of the last study. Not exactly ideal, especially for a child who has some sensory issues.
Regardless, the test was needed! And we could not prolong it any more, as our new Neuro (who we LOVE) wanted results. So we dragged our feet into Linksfield, for another long night. (Completely off the topic - what will it take for private hospital management to realize that it is impossible to sleep in a faulty lazyboy. You spend the evening trying not to breath or move, and the second a deep slumber ensues, the heavy relaxation of your muscles causes the chair to bolt upright, catapulting you forwarded through the air whilst half asleep, trying desperately hard to hang onto the concrete block they call a pillow? )
The evening progressed as expected - lots of tears when the electrodes were being placed, hatred for Bongani (the neuro technician) for wrapping his head in bandages, and less than impressed with his mommy for letting it all happen. Ironically, I hardly ever watch the EEG monitor when we do these studies, but this time I couldn't take my eyes off the monitor. I guess instinct has been telling me something is not right. He only managed to sleep with his BiPAP for approx 2 hours, as we were trying a new mask which he hated and I had given ours to Daddy to take home. Not ideal, but it was the best we could do.
Morning came, more tears at the removal of the electrodes, combined with a lack of sleep. It was the first time that I had really spent monitoring the EEG screen, and observing Juan. I just knew it was going to be a difficult result. We headed home (after finding someone had based into my car in the parking lot (true story), and tried to forget about the traumatic evening and enjoy the rest of our day.
The first result came in a week later. Good news is that his obstructive apnoea has improved. This is probably due to his increased muscle strength and improved diaphragm which is making breathing easier. The bad news was the central apnoea has now increased to 8.8 episodes an hour. Average time for not breathing is 16 seconds with oxygen levels dropping to low 80s. Can you imagine the quality of sleep Juan must be getting considering he wakes up every 7 minutes due to having stopped breathing? This was the first indication that good news wasn't coming. The second was the call from the neuro indicating we needed to come in to discuss the EEG results.
The results were somewhat expected but at the same time, hard to hear. We realize that he has been struggling, subtle changes in his moods and energy levels have indicated something was not quite right. During the school holiday's I have seen him trying hard to move around but not being able too as much from lack of coordination, and just generally not wanting too - bottom line, he just hasn't really been himself.
In a nutshell, the EEG has shown continuous epileptic discharges in his temporal lobe, and his epilepsy is currently intractable, meaning he is having seizures all day, everyday, and they are worse at night, and they are not responding to medication. It is important to remember that these are not tonic-clonic seizures, and he is able to function through them, however, they still cause damage. The fact that he has not responded to any of the previous medications leaves us with few options.
Towards the end of last year, we had Juan's brain MRI done and reviewed by an international expert who was in SA. This doctor immediately cautioned us to the fact that Mesial Temporal Sclerosis was indicated on the MRI. To our disappointment, this current EEG is in line with this diagnosis.
There are options, but surgery is currently being discussed as the probable way forward. We have had to drop off many previous MRI scans etc in order for a neuro-radiologist to review them, and do what the neuro referred to as a 'reconstruction'. We will probably also need to do a functional MRI which will determine exactly what actions are effected by these seizures. Vagal nerve stimulation and a lobectomy were 2 of the surgical interventions mentioned.
We are due to see the Neuro again in 2 weeks, and have another discussion. She has asked us to increase his current medication in the meantime.
As luck would have it, we have been away for Juan's Ouma's birthday, and he is not feeling great at all. He is pale, lethargic and very "spaced out". To the point, that I actually sms'd the neuro to see if we can possibly admit him for a Epanutin drip to try give him some relief - she is away and I am awaiting her feedback. Last night, he tried to get up and his legs just gave way underneath him. He is salivating more than normal, is relatively un-coordinated and has no energy to ride his bike without getting off as white as a sheet. Generally, he is so happy to be with his Uncle Awie, and play ball etc but at the moment, he would rather lie down under a blanket.
As for Frans and I, we have lots of thinking ahead of us, schools, lifestyle, expectations, Juan's future, and what is best for us as a family. This is partially the reason we have been so quiet. It is so hard to not have a roadmap for the journey ahead, and to just forge ahead blindly into the darkness.
For now, we just pray and hope to find the right solution for Juan soon.