It’s been a while since my last post and a lot of things (mostly bad) have happened. I’ll try to recount the last few days as best I can from memory but some of the facts are a little hazy at best.

Cuddles from his sister

Just over a week ago Joshua had an EEG to check how the drugs (Keppra and Carbamazepine) are working. Visible seizures were limited to one every few days and aside from the ongoing sleep apnea he seemed to be coping well. Unfortunately the EEG showed that the seizures were continuing even if we couldn’t see them and his neuro doctors told us that the drugs were not working properly and we needed to change to a new drug called Phenytoin straight away. Unfortunately Phenytoin and Carbamazepine counteract each other and you can’t just stop the Carbamazepine, you have to wean it down slowly. Which means that while we’re weaning one drug and increasing another they might count each other out leaving Joshua with no pharmaceutical support at all.

On Thursday last week we had an another MDT (multi-disciplinary team) meeting to discuss the next steps for Joshua. Although the seizures weren’t under control, he was managing more and more time off the ventilator to the point where he only needs it when asleep. At the meeting the neuro doctors didn’t really add anything new regarding the current situation, but they did say they wanted to perform a muscle biopsy to look more into the possibility of Joshua having some kind of mitochondrial disease which we thought we’d ruled out when his genetic tests came back negative. The respiratory doctor gave some positive news that we could start to move Joshua to a portable ventilator. We’ve known for a long time that he would need to be ventilated at home in some capacity so the chance to get him onto a portable ventilator moves us one step closer to the door. Also it means that while we’re on PICU we might be able to take him for a walk to enjoy some time outside!

On Friday it all started to go wrong. Joshua started to have lots and lots of seizures. We assume due to all the changes in his medication. Not only were there more visible seizures, but they were lasting longer and he was having more profound desats with them. This continued into Saturday when the neuro doctors agreed to give him Buccal Midazolam if he has seizures that last over 5 minutes or more than 4 in 40 minutes. Joshua has the Buccal Midazolam once on Saturday and quickly reached the limit of 3 times in 24 hours on Sunday. At one point he had 5 seizures in 5 minutes and we lost count of the number that he had in the day around the 70 mark. If he reaches the threshold again the next step is sedation and full ventilation. Also during Sunday they added back in the Keppra which was stopped after the MDT and a new drug called clobazam.

Saturday and Sunday were a couple of late nights on PICU for me and Laura. His seizures were completely out of control and we really started to fear for the worst. Over night on Sunday he seemed to cope a little better. He still had several seizures, but they were a lot shorter and didn’t affect his sats at all. Then on Monday Joshua had his third set of vaccinations. Other than that, Monday daytime was pretty unremarkable. Monday night however was a different story altogether. We think due to the vaccinations, Joshua’s temperature started to rise and at midnight and around 39 degrees he went into a seizure that lasted for 2 hours. He’s previously only had seizures that last 30 seconds to a minute so this was uncharted territory for him. Unlike his other seizures where he goes red in the face and his body goes rigid, this time he was shaking uncontrollably. He had 2 lots of the Buccal Midazolam and an IV dose of Phenytoin but nothing could stop the seizure. The nurses stripped him and covered him with ice packs and eventually as his temperature came down, the seizure subsided.

We hope that this “mega seizure” was down to his temperature and the vaccinations but I guess time will tell. Tuesday he has been quite settled and aside from a sleepy start he’s almost back to himself, but he is pumped full of drugs from Monday night. I bet most of us would have a good day on that cocktail. He did manage to get onto the portable ventilator though which is fantastic.

2 thoughts on “Hard to keep track

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