After a few unsuccessful attempts to take jack off the ventilator, we were becoming increasingly more and more concerned for jack, but never once did we think that we could actually lose him, although looking back, he was very seriously ill, maybe we were naive or ignorant, but losing jack was not an option. After about 3 weeks we were proved right, he eventually found his fight and was off the life support machines. All praise to the doctors and nursing staff, they were fabulous. Jack was allowed home a week or so later.
It seemed as if he was just making a full recovery from his spell in ICU, when his appointment for his operation dropped through the letterbox, our hearts sank, i can remember thinking get this out of the way, and everthing will be fine after that. Jack had his fundoplication and gastrostomy tube inserted, and a big scar down the left hand side of his chest, as for the gastrostomy, i've never seen anything quite so barbaric looking in all my life........a hole in his stomach with a tube that dropped down to his knees.
The surgery actually worked, the vomiting stopped, and the feeding became easier, and most importantly jack was a lot happier, he started to smile more, and we did'nt need to pass that awful naso~gastric tube again. But lady Luck, who never seemed to like us very much, had other plans. 3 months after the operation Jack started retching, everytime he was fed, and for a considerable time afterwards aswell. This is a problem that never really left jack for very long, now after a Fundoplication jack was unable to actually vomit, as the operation stops stomach contents entering the gullet. Within a few weeks of constant retching, he started to vomit again, dribbles at first, then back to as he was before he had the operation. To say we were downhearted was an understatement. So it was back to see the gastro~surgeon, where he imformed us that it was likely that the fundoplication had failed, and that this sometimes can happen, so what next?, we asked, he told us that when fundo's fail the most common next step is a pyloroplasty operation, which is a procedure to enable the stomach contents to empty into bowel more quickly, rather than it staying in the stomach churning around which might have been the cause of the nausea. again rather than make jack suffer any longer than neccesary, we had no option but to agree.
After a few weeks wait, we got a date for jacks operation, the week before christmas,
all went quite smoothly, although we insisted on jack being sedated for a few days after the op........as jack was a "nightmare child" after coming round from the anaesthetic, because he had no control over his spasms, and would hurt himself, we were frightened he would undo what the surgeon had just done, after a few scares with bleeding from his scar, he was allowed home on christmas eve "99" it was not the perfect christmas, but at least we were together as a family with the much neglected daniel.
Amazingly the operation seemed to work, jack again stopped retching, and was feeding quite well, and we were just beginning to get back to some normality. .....Was this it?.....could we now get on with being together as a family and making the best of what we had, the answer was a big "NO".........it worked well for about 9 weeks then jack started retching and vomiting again. Soon after he began to lose all his weight and started to become pale and skinny. Doctors were insisting there was no more operations that jack could have, so we had to endure jacks good days, and his bad days, meanwhile he started attending a special needs nursery, called Rainbows, jack really enjoyed his time here, although he could'nt talk, we just sensed it, apart from his retching, and now constant diarrhoea, he seemed really happy, and had the broadest smile and an infectious laughter, that could have melted the heart of the hardest of people. After a few more minor setbacks, like chest infections, and a few more stays in hospital, jack was coming on very well, making more noises, and trying to reach out for things, and generally seemed happy, he was taking small amounts of blended baby foods, and yoghurts, still retching, but he was a much happier child, he was sleeping all night, and just loved all the attention, and almost always got it. But jack was a pure mummy's boy, if his mummy left the room, he was not a happy little boy at all, and would let all and sundray know about it aswell.
|
