It has been far too long since my last post and so much has happened!
In early October Ethans breathing rate was increasing as was his oxygen, we was back and forth to the local hospital, but as he was quite happy within himself not too much was done.
Then we took him in again, and as he needed more then 2 litres of oxygen they kept him in. It seemed as soon as they kept him in he went from bad to worse, he was needing near 10 litres of oxygen and was getting really distressed. The doctors was saying his blood gases are good, so therefore he is good. I asked them to try steroids in case it was chronic lung disease flare up and they did. It got to the point that he was so distressed that I begged them to move to a London hospital, and to call Great ormond Street, which they did but nothing much was decided.
Things were going from bad to worse and I kept saying he needs ITU, he needs it now, but it was another 24 hours with me saying - you take him to London or I will, and his nurse saying she wasnt happy to care for him - that he was put back on the ventilator and we went to a new hospital. St Georges in Tooting London.
St Georges is a lovely hospital, with a just refurbished PICU - and a Ronald Mcdonald house for parents to stay in. They do have a couple of rooms in the parents sitting room for parents to stay short term until there is a bed in the Ronald Mcdonald.
As soon as he got to St Georges I past on all the discharge summaries of Ethans just to make sure the doctors are all up to date. They could see on the discharge summary that Ethan has metabolic bone disease and that his bones are weaker and so wanted to do an xray of a wrist to check bone density. They asked me which wrist and I said left, as his head was facing right and would have made it difficult to Xray the right.
As it happens that Xray showed a small green stick fracture just by his wrist. I said I was not surprised considering all the pulling about he has had with canulas in etc. The type of fracture it was is the type you would get if you bent the hand down, which is what the doctors do then they have to find a vein. It also indicated that it was about 7-10 days old though these fractures are difficult to date. By this time he had been in hospital 14 days.
Because of this it was decided to do more investigations and he did have a full body skeletal survey - which showed up more fractures in every limb, and showed up bone disease.
During the time at St Georges (just 6 days) his ventilator setting were not too high, but it seemed to take a while for any progress to be made. They did find rota virus in his stool which they said could have caused inflammation of the chronic lung but they doubted it. Some of the consultants thought he could have been aspirating just stomach contents, they said if he has another episode like that then they would do a nissens fundoplication. Where the stomach is effectively tightened to stop anything coming back up.
We went back to local hospital after 6 days and went home a week before his first birthday, he was still on morphine but we came home on a weaning program.
In early October Ethans breathing rate was increasing as was his oxygen, we was back and forth to the local hospital, but as he was quite happy within himself not too much was done.
Then we took him in again, and as he needed more then 2 litres of oxygen they kept him in. It seemed as soon as they kept him in he went from bad to worse, he was needing near 10 litres of oxygen and was getting really distressed. The doctors was saying his blood gases are good, so therefore he is good. I asked them to try steroids in case it was chronic lung disease flare up and they did. It got to the point that he was so distressed that I begged them to move to a London hospital, and to call Great ormond Street, which they did but nothing much was decided.
Things were going from bad to worse and I kept saying he needs ITU, he needs it now, but it was another 24 hours with me saying - you take him to London or I will, and his nurse saying she wasnt happy to care for him - that he was put back on the ventilator and we went to a new hospital. St Georges in Tooting London.
St Georges is a lovely hospital, with a just refurbished PICU - and a Ronald Mcdonald house for parents to stay in. They do have a couple of rooms in the parents sitting room for parents to stay short term until there is a bed in the Ronald Mcdonald.
As soon as he got to St Georges I past on all the discharge summaries of Ethans just to make sure the doctors are all up to date. They could see on the discharge summary that Ethan has metabolic bone disease and that his bones are weaker and so wanted to do an xray of a wrist to check bone density. They asked me which wrist and I said left, as his head was facing right and would have made it difficult to Xray the right.
As it happens that Xray showed a small green stick fracture just by his wrist. I said I was not surprised considering all the pulling about he has had with canulas in etc. The type of fracture it was is the type you would get if you bent the hand down, which is what the doctors do then they have to find a vein. It also indicated that it was about 7-10 days old though these fractures are difficult to date. By this time he had been in hospital 14 days.
Because of this it was decided to do more investigations and he did have a full body skeletal survey - which showed up more fractures in every limb, and showed up bone disease.
During the time at St Georges (just 6 days) his ventilator setting were not too high, but it seemed to take a while for any progress to be made. They did find rota virus in his stool which they said could have caused inflammation of the chronic lung but they doubted it. Some of the consultants thought he could have been aspirating just stomach contents, they said if he has another episode like that then they would do a nissens fundoplication. Where the stomach is effectively tightened to stop anything coming back up.
We went back to local hospital after 6 days and went home a week before his first birthday, he was still on morphine but we came home on a weaning program.