Big meeting with steven and Rob 6th april 2011

We have a meeting planned today to meet with Rob Martin and Stephen Marriage, Benjamins Core Consultants. Its later on the day so we are able to spend some time with the little wiggler and do his cares. After administering his enoxaparin and  other meds, giving him a wash and changing his botty, Its cuddle time. Benjamin is really into the mirrored disco ball by his head so I make sure he can see it and watch it spin. Today is a good day so far!

More Belly time but tryimg to escape his bed

We meet with Rob and Stephen and Zowie , our nurse for the day.It was a very interesting meeting as we found out that Benjamin still has a long way to go and they will not be letting him home until he is extremely stable. Rob said that Benjamin has been and is still a very complex baby and he never dealt with a baby with his level of difficulties, with such a complex valve problem or such a determined little boy. That was very scary to hear but very good to hear as it just proves how serious they take the situation and how much they are putting into his care.Stephen says sometimes it hard not to believe Benjamin is indestructable  but we need to be aware he is deliacte and the sedation and ventalation issues are just part of what he has to overcome.
We asked about the CT scan he had last week and we found out there may be an issue with his brain. He may have Brain atrophy, not apnea as I mentioned earlier in my blog.

Benjamin has fluid surrounding his brain as his brain is quite small compared to a normal brain and the question has been raised if he was born that way. There is no way of knowing that at this stage and they will have to review it as he gets better.  Me and Dave can deal with learning difficulties so its not a major issue but as always I'm sure there is more to it than that.

It was really nice knowing that they have noticed how we have been dealing with things and that they thanked us for being so patient and so seemingly calm about it all. That made me laugh, If only he knew I've had murerdous thoughts at times. Luckily never towards the doctors or nurses, just generally to stupid bus drivers or rude students who knock you to the ground so they can get the last tin of beans in the local shop  lol

So we carry on knowing we will be here for 3 months maybe more. We will adapt and change and deal with the situation knowing that we are closer to taking him home and that we will be a proper family soon.