Back Again!

Monday 11th January we had a clinic appointment at the hospital, where the doctor advised me they were going to refer Dylan to Great Ormond Street Hospital. They had been in contact with them over the weekend and decided that Dylan's condition would need a lung transplant one day which GOSH would do, therefore they wanted to assess him and decide and further tests and surgeries such as biopsies and pleurodisis (sticking the lungs to the chest wall of sorts) to stop the lung collapsing should any more cysts burst.

The doctor advised me that it would take 4-6 weeks to hear from Great Ormond Street and that he would make Dylan a clinic appointment for in two months time..

Later that evening Dylan seemed a little distressed and I started to worry. He soon calmed down though and went to sleep. The next day he was up and down, one minute he was fine then the next seemed upset. The deciding moment was when he was complaining of pain from the cold on the school run, so I asked my husband to pick up a portable SATS monitor on his way home from work. When we checked him his oxygen levels were sat at 86% so we phoned an ambulance.

After a few crossed wires at the hospital and an xray, it was discovered that Dylan's right lung had collapsed again, and we were sent back to QMC where they monitored him overnight and then put another chest drain in the following morning...