So Many ups and Downs but time for explinations

Benjamin still cant handle being handled and having his cares done. This is because he has become addicted to his sedation medication, medazelham. Its like a junkie detoxing and can be very distressing to watch especially as I am so used to touching him and picking him up.He will have to go through a weaning process that will take weeks and weeks. It will not be a smooth run and the doctors warn me that it will be upsetting and feel like we have gone backwards at times.
He may have an issue with his lung too, poor little man is having to have physio everyday, sometimes twice a day. The problem may have come from being on the echmo machine or his pulmonary arteries being wider and sending more blood out.There is always something new to find out about Benjamin and I want to scream at the doctors to stop messing about and fix him, But honestly they have done absolutely everything they could. They have saved his fife many many times and I have so much respect for them. I just want my baby boy back

I had a meeting with Gareth who is a cardiologist and who has operated on Benjamin several times. He has explained the following which I hope  helps everyone reading this understand what has happened to Benjamin on a "organ" level. It has helped me understand more.

1. Benjamin was born with 1 Truncus which has been separated and adapted. This was the main reason for his first operation and can be seen in detail on page 1 of this blog.

2. Benjamin had a leaky valve, normal hearts have 3 leaves although some peple are born with 2 and manage fine.Benjamin had the 1st operation to the valve to a 3 leave. This didn't last and had to have another operation to turn it into a bicuspid (2) leave.

3. He has a damaged coronary artery, which is the feeding vessel for the heart its self. One side is strong and the flow is good but as the other side is as thin as a shoe string it isn't supporting the left side of the heart.
Benjamin's heart attacks have caused damage to the heart muscle its self and the fact that the coronary artery is not supply the correct amount of blood to the muscle. This may be an issue that cannot be rectified and poor little man may never be strong enough to get better.

4. The valve is key to the blood flow through the heart and the body. The pressure that builds up in the valve forces blood in the correct places but as Benjamin has a leaky valve and a small coronary artery , blood does not always get where it needs to and at the right pressure. When he becomes poorly or reacts badly to the handling he can become grey and deep purple and this is an indication that blood flow is not getting pumped around properly.

So that was a very basic physic lesson with what is wrong with Benjamin and what he is still dealing with and will always have to deal with. I cant shrug off my pessimistic feelings about Benjamin's improvement and find it very hard to sit there and not touch him or pick him up.