James

Just adding my own words to Rob's blog this week, hopefully to make things a bit clearer.

Firstly, as regarding James' MRI scan interpretation we don't actually know very much at present. The news on Tuesday came as a shock, mainly because we went in for an eye appointment and came away with questions about his brain. The consultant obviously assumed I knew and at the time I said nothing as I was so shocked, plus it is not his job to explain brain scans to me!

On a purely factual level it is not the least bit surprising that James may have sustained some level of brain damage, somewhere along the way. Of course James suffered both respiratory and cardiac arrests during his long illnesses and was kept alive through some long periods by mechanical ventilation, especially when he was very small and his lungs were delicate. The bowel infections which required surgery were due to compromised blood supply to his bowel so we know it was a bit hit and miss with his oxygen supply.

We had previously understood James has/had an immature brain, which as Rob said we thought was down to his illness and deprivation of 'normal' first year stimulation. What has now been raised is the presence of some early brain damage. Having the physical signs on a scan means nothing in itself. It is only a physical picture and gives no indication of the function or lack of function of the brain. So we don't actually know anything really, except that the eye doctor suggests that James may have none, some or more of a whole list of potential issues which we can't test at this stage anyway so it tells us very little. The point was that the physical picture he was referring to was one we weren't previously aware of in the exact words he used on Tuesday (which were words we recognise because Morgan has an extreme form of the same thing).

Often Rob doesn't post something here until we knew something definite and factual. Writing this website is therapeutic for him and means we can pass on information to family and friends without the emotional drain of explaining things in person several times over. The downside for you reading news this way is that you may be hit with information in print without the ability to ask questions and understand the exact nature of things. So we are unaware of what you understand from reading the print. So this is really to say, yes we were upset and shocked, but we also don't have any firm facts yet, so we can't explain it because there isn't anything concrete to explain. Hope that makes some sense.

I will be speaking to one of the consultants (before Christmas) to ask some specific questions and hopefully improve our understanding of the facts. Until then there's no point us speculating what might or might not be the case so it's not something we can easily talk about.

Morgan has had an MRI scan today which went very well because he slept through it without the need for sedation. It will be compared with previous scans to identify physical changes. The early indications were that nothing had changed, which is good news.

Apart from all of this we are glad to be well as Rob has been ill for 3 weekends and in bed for part or all of them. We are off to Alder Hey this weekend for a party for former short gut syndrome patients (i.e. James) to celebrate the bowel unit's 10th anniversary. This should be very interesting as we will see some former long term 'neighbours' of James' and I suspect that next to his bowel peers, he has done exceptionally well, both to recover fully and be tube-free, whereas many of them still require their gastrostomies, and some their IV lines.

I do currently wonder how James ever learnt to eat and SO well. You know James really has made stunning progress. We do forget how lucky he and we are! And actually, although news about brain damage is sad, it doesn’t actually change anything about who he is or how he is doing.

Love to you all,

Sharon x