Friday, 9 December 2011

Neuro wars

Normally the clinical decisions that form a patient like Jake's care are made away from the family and we just get told what will happen next.

Unfortunately a very sweet Senior House Officer, who I'm sure meant well let slip earlier this week that there is a particularly significant decision being 'debated' at the moment; fairly vigorously.

Jake's progress has started to plateau and on Monday he had a CT scan to see if his ventricles were enlarged, indicating hydrocephalus which is essentially too much CSF fluid affecting the pressure around the brain. The general view is that he is not able to regulate this pressure and there is a good chance this is what is causing his high levels of fatigue and sleepiness. As he has had so much skull removed (more than would normally be removed we were told today) one cause for this could be that he simply can't regulate the pressure with so little skull. The challenge is that, although we have seen glimpses of Jake, he is far too sleepy for the rehab team to be able to successfully work with him.

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So, in the red corner are the neuro surgical team who believe that we should bring forward his cranioplasty (replacing his skull with titanium mesh and plates) to January as Jake's ultimate outcome may be affected by his not being able to wake enough to rehabilitate.

In the blue corner is the neurorehabilitation consultant who thinks that the risk of infection is too high at the moment and we should wait to give Jake more time to heal.

Incredibly Jake's combination of injuries and current condition are unusual enough that there is no solid, research based evidence to support either theory. And so we have neuro wars.

As with all medical decisions it is a case of balancing risk with benefit and from a glass half full perspective it is wonderful that they are all so passionate about what they do and in making the right decision for Jake.

Sister in Law and I are both leaning towards going ahead with the cranioplasty, but then we're not exactly qualified, despite having learnt lots of complicated medical words!

We have asked to speak to those tussling with this decision on Monday and will hopefully have an answer one way or the other early next week.

One thing I can tell you is that I can see why they don't normally include the family in these decisions; the enormity of it is almost impossible to grasp and it only increases the unreserved respect I have for these extraordinary people.

1 comment:

  1. Oh gosh Mrs K - this is such a mega roller coaster ride for you isn't it? I shall be thinking of you on Monday. I do hope and pray what ever the decision Jake will make more progress.