So it’s been a pretty calm week with Joshua and not much has changed regarding his status. The ventilator has been doing it’s job and breathing for him when he doesn’t and his sats have generally been very good. Laura attended a MDT (multi-disciplinary team) meeting during the week where the neuro and PICU consultants found out that they were worlds apart when it comes to Joshua’s diagnosis. While the PICU doctor had handed over that Joshua most probably had Migrating Partial Seizures of Infancy and we were just waiting on confirmation, the neuro doctor doesn’t think he has that at all. You think they’d talk to each other before telling parents all this but apparently not. Also due to the discovery of these seizures they’ve now started Joshua on a new drug called Carbamazepine. It seems to have been working during the past few days although it takes a while to build up in his system.
Now he’s not saying that Joshua’s condition isn’t MPSI, or that it’s not extremely serious or life limiting, but what he is saying is that Joshua doesn’t fit the typical presentation of MPSI and in his opinion it most likely isn’t MPSI. The test that we are waiting 5 to 6 months to come back will test for a range of things and MPSI just happens to be one of them. So nothing to get too excited or depressed about really, just more waiting. He did add that he thought Joshua probably had something totally unique to him and that we may never find a cause or diagnosis (or cure). That also fills me with both dread and hope. I mean, if they can’t find anything wrong then maybe he’ll grow out of it and this will all have just been a bad dream… right? But on the other hand it also means we wont be able to predict anything about Joshua’s future. How he will develop, if he’ll ever walk and talk, if we’ll be able to have a “normal” family life again. We’ve just got to put maximum effort into supporting his development and cross our fingers.
One thing that they did decide at the MDT meeting was that we need to start trying to wean him off the ventilator. We’re still seeing periods of no breathing from Joshua, mostly when he falls asleep so I’m not 100% convinced that this is going to be successful but we have to try. It would be great to get that face shield off him for a while though to help his development. It’s almost impossible to interact with him while he has it on. So now while he’s awake they are slowly turning the rate on the ventilator down and are going to run a sleep study on him to see in detail whats happening when he stops breathing. So that’s something to look forward to.
Oh and he now weighs over a stone the big fatty!
At home we’re into a routine now. Laura visits all day while I work and we swap late afternoon and Laura goes home to sort out Isabelle and all her activities (best social life of the lot of us!) and I stay with Joshua until the night shift come on. It’s pretty exhausting but we can only take one day at a time and hope that tomorrow is a little bit better than today.
I’m just wrapping this post up by his cot side and we think we’re seeing some seizure activity again. I hope this medication hasn’t stopped working already or maybe they just need to adjust his dose. Here’s hoping for a quiet night…