Please extend many thanks to the very skilled and caring people who put Ethan's quilt together, he absolutely loves it.
He has been a little under the weather the last few days and has snuggled right into his dionosaur quilt, I will of cause get a photo to you in the next day or two, I might be able get one of him sleeping under it too, thank you so much again, it's beautiful, love Julie and Ethan
Ethan was born full term, a healthy looking 7lb 12oz. It was several days after, his breathing seemed difficult and he sounded like a dove cooing. Ethan then developed a cold; he went into hospital but was discharged. It took numerous admissions and a cardiac arrest before a diagnosis was made, of congenital subglottic senosis, a rare condition. HGis windpipe was like an hour glass, he required urgent transfer to GOSH in London and a tracheostomy was performed at 11 weeks of age.
Once the tracheostomy was placed in his throat his voice was lost, he became silent. There were tears and expressions but no sound. He was allowed home 3 months later with a team of nurses, they took over care needs throughout the night.
It was a difficult 15 months that followed, with numerous hospital admissions and 1 week before Ethan was due for reconstructive surgery he had a respiratory arrest at home and was admitted into hospital. He was shown to have pneumonia and he required intensive intravenous antibiotics but he made surgery. Ethan underwent a long procedure to rebuild his airway using a piece of rib bone, the tracheostomy was taken away. After about 13 days he came home. I was reluctant to take him home as his noisy breathing had returned, but was forced to anyway. I contactet the ward that night. I was distraught, the Dr had advised the nurses that Ethan was not in any danger, however during a nappy change he was laid flat, cried and went into cardiac arrest. He was intubated and sedated and taken to PICU, then to the theatre where they discovered his airway had collapsed, the rib cartilage had away. A second tracheostomy was performed. He was later transferred back to GOSH, where a second reconstructive surgery took place, but the tracheostomy was left in, and a stent was inserted to support the rib cage for 6 months.
He remained an inpatient during this time and suffered further respiratory and cardiac arrests on the ward, totalling at least 15. He was diagnosed as MRSA positive. Treatment was futile whilst the tracheostomy was in place, however Ethan was kept on a main ward and not barrier nursed by staff to prevent cross infection.
After 6 months the stent was removed but surgery showed although the repair was successful his airway had collapsed in a diferent place, and his vocal coed had been damaged. Although Ethan was still mute he had learnt makaton sign language, he could communicate.
In total Ethan had then spent over a year in hospital. I requested a break from theatre and time at home and it was agreed if I accepted full responsibility for him. A local charity agreed to buy Ethan an electronic hand held voice, using pictures and buttons he learnt to speak.
I would like to add that as his mother, I am proud of him and admire his courage and strength.
Written by Julie (Ethans mum)