31st March 2011- So many issues to think about

Martin is watching Benjamin today and read him the entire book of green eggs and ham. It was so great as he did voices and even more great was Benjamin's heart rate lowered so he obviously liked it.

We have several issues to ask about:

• Stiff lungs from echmo and issues with Ventilation
• Delicate heart and the lack of reserve. How is his heart function?
• Addiction/Need for sedation and how we are going to deal with it

Benjamin's needs alot of physio as his upper left lobe is sticky and compressed. The problem areas keep swapping from left to right day by day.
He will need a Hickman line as his lines are end of days and he will be on his sedation for some time yet as well as his heart medication. We just have to wait til they have a slot for him.

When children are in ICU for a long time they can develop Brain apnea which is when the brain stops working as it would normally and development can become stunted. It is reversible and wont stop him doing normal things once we are able to interact with him and he starts to show interest. Its a scary thing but playing with Benjamin isn't going to be a chore. There are plenty of people around him to keep him entertained.

That night we spent half an hour with Benjamin. He was awake and happy and his numbers were good and we were not expecting that as after the two calls we had through the day we expected him to be unsettled and an awful color. It was a relief.

Benjamin spiked a temperature and has had to keep going to his antibiotics.
His Monogen milk is going up 1ml every 6 hours as they are worried that his lungs wouldn't be able to maintain to much of a upheaval. He still has his chest drain in so any excess fluid could get out but it would still put pressure on his  body.