Jordan

JordanJordan was born on 3rd April 1998, full term, normal delivery, weighing in at 3.21kg (71b loz) with his own hidden agenda.

He was taken into the special care baby unit within an hour of being born by a very concerned midwife where he was ventilated and subsequently diagnosed with a cardiac defect. On transferal to Birmingham Children's Hospital the next day further investigation showed the defect to be double outlet right ventricle, pulmonary atresia and subarterial VSD. At one week he had a central shunt inserted with a plan for total correction within nine to twelve months.

At 4 weeks old Jordan arrested from necrotising enterocolitis and after resection was left with 23cm of small bowel (20%) and intravenously fed with parental nutrition via a central line. At twelve weeks old he arrested with MRSA septicaemia and bounced back. At eight months old having passed from the surgeons to the gastroenterologists the discussion for discharge home began. Jordan, though, had other ideas and for four months had recurrent sepsis of the enteroccocus variety, repeated chest infections and a sudden requirement for continuous oxygen.

He was finally discharged a few weeks before his first birthday on continuous nasalgastric feeding, l8 hours of parental nutrition seven days a week and continuous oxygen. Being at home was heaven!

At fifteen months his heart was corrected although once again Jordan did not make things straightforward as endocarditis was unexpectedly present. This meant the immediate removal of his central line and a chance to see how he would fair without it. The endocarditis was subsequently treated and the central line stayed out for six months.

Unfortunately constant bouts of diarrhoea and repeated chest infections took their toll and in January 2000 a new central line was inserted but regular spiking of temperatures with rygors and no proven source of infection meant it had to be removed once again. This one had lasted twelve weeks, his sites for central venous access were fast running out and we had stern words with him!!

I remember being told if we could get him to two years then he stood a good chance of having better health. At his second birthday Jordan was on continuous nasal gastric feed and overnight oxygen. He had pneumonia during the April/ May of that year and was causing concern. Even the oncologist was called in to review him. By this time there was seemingly no department that hadn't reviewed him!
His medication was also changed at this time, he was put on omeprazole for his reflux and started on co-trimoxozole prophalatic antibiotic. And that was his turning point. I can't even remember without digging out my diaries at what point the parental nutrition stopped and the central line came out! But it was around that time.

Jordan started to attend a mainstream nursery one afternoon a week which he loved. He started to show signs of having the strength and inclination to walk (he walked at 3) and his general development improved in leaps and bounds. Despite minor problems with soft palate and nasal regurgitation he started to eat more food orally aided by the cook at the nursery who, over the next few months, increased the texture and consistency of his meals to the point where he was eating 'normally'. His speech and communication issues became HIS biggest frustration.

At 31/2 Jordan started at mainstream school in the nursery year with 100% support. He still has and needs that 100% support. He is now in first year juniors, aged 8. He endured so much medical intervention in his first two years that life seems so simple now at times. And then you start thinking about education and I feel my blood boil! He loves school but he is beginning to slide backwards and I am battling with school to ensure that his needs are met. But he is unaware of all that and in some ways that is a good thing. He receives Speech & Language therapy weekly in school from the specialist and twice