Quantum Leap

Seeing that I have had messages to blog tonight I guess I better had! Looks like my rambling is in demand, perhaps i have missed my calling in life!

Well ill keep it to the point on account of the fact iv been at work all day and night, jovie has been asleep all day and night and Lorn has been, well, Lorn all day and night.

We had our big meeting with docs, head nurse and neurologists this morning and unsurprisingly the neuros are still certain that jovie is suffering from a muscular disorder. I'm beginning to wander if they need one more case to get a study grant, or money for a staff gym perhaps! The docs disagree and think the brain holds the key so both lines of treatment will continue to be tested, all the while we have to wait for the all important dna results which won't be back for weeks and weeks. The neurologists did however admit that Jovies current meds can cause fits and seizures so they have stopped that as of immediate effect (I just about resisted the urge to say I told you so).

This would all seem like a case of same old, same old. However finally what we also have is a plan of future action. Next week jovie will be going under the knife to have a tracheostomy. This is where a tube is inserted directly into her throat which will connect to (yet another) type of ventilator. Short term this removes the horrible tube from up her nose while also opens up the possibility for long term ventilation. There are hundreds of implications to this. Not least we will be given months of training to learn how to look after jovie in this state. But what it does mean, and what is putting a smile on my face even with the prospect of this pretty horrible scenario, is that eventually it could lead to jovie being moved out of intensive, and then eventually brought home.

Its difficult to even begin to describe how exciting the prospect of even taking jovie downstairs in the hospital is, let alone maybe having her home in a few months time.

Of course it doesn't tell us what's wrong with her. (It looks increasingly likely we won't know that til the results are back in 8 weeks or more). It also doesn't mean things will get better. (There's still the chance of jovie growing out of it. There is also still the chance she may need some level of ventilation for the rest of her life.) What it does give us is more than ever something to focus on and an eventuality to plan for. More than that though, for the first time in five weeks it gives us real hope.

We must continue to take each day as it comes, and pray that they can work out what is causing Jovies breathing problems. We hope she will grow out of it or that a treatment is available. In the meantime however we can allow ourselves to think about what was previously only a dream and what a certain Dr Samuel Beckett spent many an episode searching for: home.

Oh boy.