UPDATE**

Maddie is nearly 7 months old.

She is now recieveing palliative care.

She has Heart and Lung disease

At 2 weeks old she's underwent open heart surgery at Bristol Children's Hospital. This was too patch and repair her Hypoplastic aortic arch.

Maddison has complex congenital heart and lung disease. She has pulmonary hypertension, a large ASD, semi obstructed scimitar vein (PAPVD) and left lung pulmonary veins that are partially obstructed, a hypoplastic right lung, large dilated right ventricle and a re-coarctation of the aortic arch. Her medical team at Bristol Royal Hospital for Children have reached out to Great Ormond Street and Evalina hospitals for a second opinion as the risk of surgery is extremely high. Evalina have said they will carry out some tests but at present we are waiting for them to have a bed for her.

Now Evelina have decided they are to prioritise their local patents. Meaning Maddie won't be seen. Bristol have decided to continue her care here. Which we are grateful for.

Like last tine Lukes pay stopped. The finance team the hospital have advised sick pay which he has gone ahead with but it's extremely reduced pay. He will be remaining here with myself and Maddie. We are stronger as a team.

B