4) From My Side - what the doctors said

Well, they haven't said a lot, which is probably the right thing to do.  I was impressed with Dr B, the neurologist over the first weekend at the Royal Hallamshire.  He was able to communicate well with Elizabeth.  He noted that she had been fully aware of what was happening to her when the haemorrhage occurred.  He was aware of all her ability, especially how she could communicate.  We noted how the doctors and nurses, even though Elizabeth seemed very unwell, directing their gaze and conversation to her, and not her parents.  Dr A, who was clearly a lovely man, did shout at Elizabeth, which was not necessary, because her hearing has been completely unaffected.  Dr H assessed Elizabeth's eye sight.  He noted that the muscles in her eyes were quite severely affected.

We understood that from the initial scans of Elizabeth's brain, that a bleed had occurred in the pontine area of the upper brain stem.  This is where a mass of neurological fibers travel to all parts of the brain.  Every muscle that has voluntary control via the brain was affected, but particularly on Elizabeth's left side.  Even in the early days though, Elizabeth's physios felt that they could detect vague movement in her left side, which was encouraging.

The conjecture was that there may have been a cavanova, or group of capillaries, in that part of the brain, where a slow build up of blood had been occurring, leading to a rupture.  We had some conversation about where Elizabeth's experience of the skin condition Coup de Sabre, facial scaring caused by a a manipulative autoimmune response, similar to psoriasis,  may relate to the haemorrhage.  Way it the course of the injury?  Was it a consequence of the injury, the bodies way of reacting to a problem it detects but can do nothing about?  Or the worst option, did the medication Elizabeth take to inhibit the Coup De Sabre scaring actually weaken her internal brain vessels?

The doctors we spoke to all felt that the last explanation was very unlikely.  The fact that Elizabeth has two very rare conditions did indicate that their might well be a connection between the two, but we do not know the causal link.

So the doctors say very little, and the nurses and therapists do all the work, and we are grateful, because they are all doing their jobs well.