A massive massive thank you from Louis and I for his totally amazing quilt. We received it today, the same day we were contacted by the transplant team at Birmingham children's hospital to say that Louis is actively listed for a liver transplant. His quilt will be admired by all on ward 8 each n every stay! After a really tricky few months I had a tear in my eye this morning, thank you so very much to all those involved! His love for fishing is his release from all so the quilt is just the icing for him!!! Love to you all and a huge thank you once again xxxx
Louis spent a month on the neonatal ward from birth with meconium aspiration, a pneumothorax, strep b and a very stressed Mummy and Daddy!!!
His condition slowly improved and we were allowed home to start life as a family of 3........ numerous chest infections, courses of steroids and a mother who feared she was being labelled as neurotic with the GP and Louis' younger brother, who exhibited similar symptoms was diagnosed with Cystic Fibrosis at the age of 4. I immediately knew Louis would be diagnosed with the same condition.
Cystic Fibrosis continues to cause Louis considerable difficulties. 12 years in - more specifically his CF has chosen to target his liver. He is currently listed for a liver transplant at Birmingham Childrens Hospital and so we are trying desperately hard to keep on top of every infection he gets to keep him as well as possible prior to his call.
Louis struggles daily with his condition, feeling continually sick and with virtually no appetite at all at times relying heavily on nutritional supplements and regular oral and IV antibiotics. the back pressure from his liver has resulted in a massive spleen meaning he has a very distended tummy, and therefore a very restricted space for opening his lungs fully. He now uses a machine to help him breathe at night to help him open his lungs moving the bugs around so they don't have such a haven to thrive at the bases of his chest!
He works very hard to make sure he does his treatments and concentrates on several physiotherapy sessions a day again to try to keep himself as well as possible. It is however really tough for him, as a 12 year old lad, he just wants to be the same as his friends xxx