All was not perfect, but we were coping, and we were trying to get jack into a sort of routine, well as best a routine as we could have hoped for. Jack developed a lot of problems with his gastrostomy tube, it was forever leaking, and the acid that was in his stomach burnt the skin around the site of the stoma, jack suffered with this since he had the gastrostomy, and it was sometimes quite difficult to treat.
Things came to a head when jacks covers in his cot were covered in blood one morning, he was leaking blood from the gastrostomy site, he was taken to hospital, then later transferred to the childrens hospital in Manchester, the vomiting got worse, he could not even keep water down, Doctors were very concerned that he was losing weight very quickly, and after discussions, doctors felt that jack might be considered for a new operation called a Gastro~Oesophagael~Dissociation, but the only surgeon that could do it was on holiday for 2 weeks at the time, he was contacted, and he advised that jack be fed via TPN (total paternal nutrition) it's a central line that is stitched into a main vein, and he would review jack when he returned from his vacation.
When the surgeon returned, he agreed to do the operation, after 2 cancellations, jack eventually went to theatre, this was major surgery, which was like a stomach by-pass, it involved disconnecting the oesophagus from the stomach, and connecting it with his bowel, then stitching his stomach to the chest wall, the operation was complete success. Jack stopped retching and vomiting, he was given a new lease of life after this, he was a much more settled and happy little boy. Apart from the odd chest infection, and gastrostomy troubles, things were fine, jack was happy, and was settled into his nursery, his personality was beginning to shine through, like never before. He was taking small amounts of food, and devoured yoghurts and choclate.
August 26th 2001 started as any other, he would be in a grumpy mood for a little while when first woke up, then would gradually come round, and start smiling and giggling, this was completely normal for jack, at around 3pm, i started off jacks milk feed through his Gastrostomy tube via a feed pump, 15 minutes into jacks feed he started getting a little agitated about something, he normally only got agitated if he was unwell or was uncomfortable, he would show his agitation by stiffening up and sweating. I had no reason at that time to suspect anything else other than maybe a teething pain or a wind pain, so i gave him calpol. As the afternoon progressed, he was showing no signs of calming down, i took his temperature, it was normal, i just thought it was going to be a long night, and made sure there was enough calpol in the bottle to see him through till morning. In the early evening jack was not settling down at all, i eventually got him to sleep at around 8pm, but by 8-25pm he was awake again, so i decided to take him back downstairs, i was shocked to see a large brown stain where his mouth had been, and now he was panting, i was now worried that he was very ill, i had seen the agitation before, but i have never seen the brown fluid before, or heard him panting like he was, so i phoned the hospital and gave them jacks symptoms, it was decided to take him into hospital to get checked over. Once in hospital, he was seen immediately, after an examination the doctor thought it best that he be observed overnight, and bloods and tests done the following morning, so as jack could rest.
Overnight jack became steadily worse, he was now vomiting the brown fluid, and the panting that he had, was becoming more intense, nurses did a strip test, on the brown fluid that was coming from jacks mouth, it tested positive for blood. They decided to move him nearer the nurses station so he could be watched more carefully, and a doctor was called, when he arrived, he was still unsure as to what to do, so he said Jack would just be watched overnight, and he would call the consultant in the morning to come and take a look at jack.
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