Jack was born on monday 11th May 1998 at 7-53pm weighing 3.96kg, that was the start of jacks battle for life and pure determination to fight for life. We were so looking forward to jacks birth, as my Father was dying of oesophaegal cancer and i'm sure it was his wish to see him before he died, sadly it never happened, when jack was born he was rushed to the intensive care unit and remained there for 4 weeks, my father was far too weak to leave the house, and jack was far too ill to leave the hospital, He did however see a photograph, but seemed to deteriorate very quickly after that, it was as if although he clung on to see jack, a photograph was the next best thing, and his fight was over, he died on 27th May 1998 16 days after jacks birth.
Jack needed to be ventilated for a few hours after his birth, he was also having short fits. The following day he was breathing by himself, and he stopped having the fits we thought that was the finish of it all and he'd be fine and might be home in a few days, never could we have been further from the truth. At first we noticed jacks head was arching towards his back, the consultant paediatrician said these were abnormal movements and were normally associated with trauma to the brain, he did say however, that once jack was weaned off sedation drugs that these movements may cease. As the days passed by, the consultant seemed dash our hopes a little more each time we spoke with him, firstly jack had a trauma of the brain, then it was that he had suffered an injury to the brain, that may affect jack in the future, then it was a severe injury, that would affect jack for life, finally he was diagnosed with quadraplegic cerebral palsy. it never really sank in what this doctor was telling us, having a severely disabled child was something that happens to other people, not us, it can't be us, we're not prepared, we have had no training, how the hell are we going to cope, all these thoughts were racing through our heads, it took a long while but eventually we learnt how to revolve our lives around him, and also give the other light of our life "Daniel" ( who had only just turned 2 when jack was born) some sort of normal life.
Jack had poor sucking and swallowing co-ordination, which made feeding become a problem, so he needed to be fed via a naso~gastric tube which is inserted up the nose and into his stomach, something we needed to learn to do before he was allowed home. It took a while but we learned how to pass this tube, although it was a job neither of us relished, it had to be done.
We finally got jack home, the first 3 months were complete hell on earth, as he never slept and he would scream for 12 hours a day non stop, we were nervous wrecks, it felt as though it was going to be like this forever, during this time he also started to vomit everytime he was fed, it was like something out of a horror movie when he vomited, despite this he was gaining weight quite well, so the doctors were not too concerned at that time. But after a series of hospitalisations for chest infections and croup, his weight for his age fell below normal limits, he was also vomiting for England by this time aswell. Something had to be done and his consultant reffered jack to see a gastro~surgeon, after a brief meeting he thought that a surgical procedure called a "Fundoplication" with combined "Gastrostomy" was the way forward for jack. Inside we wanted say NO ....purely for parental reasons, no parent wants to put their child through surgery...... but the vomiting had to stop, and we knew it could not have been very comfortable for jack, so we agreed.
When Jack was around 9 months old he contracted "Bronchilitis" so severe he needed to be ventilated, and transferred to Pendlebury Childrens hospital in Manchester and placed in the intensive care unit, how much more could we take....i found myself praying to God to just leave him alone, he looked so small and helpless and we felt completely useless as parents, because we could not make him better. It also meant Daniel had to stay at his granparents house, as we were 35 miles away and jack was in ICU.
This was beginning to become a regular pattern for daniel, jack gets ill, daniel stays with grandparents, if we could have brought him with us we would have done, but ICU is no place for a child under 3 .....too many wires!!....and it was heartbreaking when he had to leave after visiting, but under the circumstances jack was our number one priority, and on this occasion needed to come first.
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