The plot thickens

For over a week now jovie has been supported by a half-ventilator which breathes at a low rate for her but does allow her to breathe on her own as much as she chooses to. Its not quite full ventilation but not quite minimum support either. The tube from this is inserted about 5.5cm up her nose into the back of her throat. The main problem this causes is the pulling on her nostril when she moves.

That was until last week when jovie seemed to start showing signs of having a cold. Since then the tube has had to be regularly changed after becoming blocked with saliva and snot. For the last two nights running it has had to be emergency removed when its become totally blocked causing jovie to literally choke on the tube that is supposed to be helping her breathe.

It happened for a third time this morning, which in turn set off the most distressing turn of events we've dealt with so far. After the tube change jovie didn't calm down as normal, but instead started to have quite a severe seizure. Cue much panic and action from doctors and nurses.

An ECG was later performed once jovie had calmed down, and it showed a spike in her brain pattern which indicates she has been starved of oxygen in a small part of her brain.

Putting two and two together would indicate that this was caused by the tube blocking. But apparently not so. If it happens again it could mean epilepsy, if it doesn't it may be due to a number of reasons which may or may not fit in with the rest of our ever changing puzzle.

Attention has now fully turned to Jovies brain (the neurologists have STILL been persisting with the muscle disorder theory). Another MRI scan is surely a certainty now in the coming weeks. Yet the next step still seems as clouded as ever. We have our big meeting tomorrow which will hopefully shed some light on the planned road ahead. Its needed as all in all we are firmly in the land of the lost.

We now know jovie definitely has something wrong with her brain, but how serious it is, what caused it, what effect it is having or may have, or even if its the cause of her breathing problems remains a mystery. Incidentally amongst it all jovie has actually gone a good couple of days without many breathing drops of note.

Communication seems to have gone off the boil here, so we have started writing every little thing we see that seems out of sorts down in Jovies little book. The care team has yet to offer the consistency in nurses it promised and all the while jovie fights on oblivious to the growing concern and frustration of her folks.

It was actually her due date today. Happy five week birthday kiddo x