Well we got onto the portable ventilator at the first go. Even the nurses were surprised at how quickly he took to it. And just when we started to talk about maybe taking Joshua for a walk around the hospital to get him a change of scenery or maybe even some sunlight he started to … Continue reading 73 days and counting
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. Just over a week ago Joshua had an EEG to check how the … Continue reading Hard to keep track
Just like everything else, we needed two attempts at the sleep study to get it right. The decision was taken that Joshua should undertake a sleep study so that we can see in detail how he breathes in different stages of awake and asleep and what affect that has on him. The respiratory doctors had … Continue reading Sleep study
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 … Continue reading A quiet week
On Thursday Joshua had a 24 hour EEG. We've been pushing for this for a while because the normal 1 to 2 hour EEG's haven't shown anything and we were really starting to believe that Joshua was having seizures. On Friday we got the results. I was at the hospital with Isabelle and my parents … Continue reading Migrating Partial Seizures of Infancy?
So we just got one of the genetic results back that we've been waiting 3 weeks for and the good news is that Joshua's PHOX2B gene is normal which is great news and means he probably doesn't have Congenital Central Hypoventilation Syndrome. Apparently this can be diagnosed clinically so they still might diagnose him with … Continue reading Another one passed
Yes, yes it can just be a coincidence. We got Joshua's B12 result back today and his level was normal. On to the next results...