Update on progress:
I used our private health insurance to get the diagnostic tests done privately. Echocardiogram, ultrasound and MRI sowed that there are no structural issues with Chloe's heart, liver and brain thank goodness. However we now know that there is extensive haemangioma in her neck. I had noticed the swelling in the past couple of weeks. It appears like swollen glands at the moment.
We are due to begin propranolol treatment today.
Yesterday the health insurer said they would not cover any treatment. I think that they will pay for the diagnostic costs thus far but none of the treatment, hospital fees or consultation costs from today forwards. So today will be expensive.
I guess we will try to go back to the NHS but to put it in perspective I have only just received a cardiology apt for next month under the NHS, this is despite the NHS paediatrician thinking that she heard a heart murmur. Are the NHS really going to be able to accommodate weekly BP checks etc.