About Oscar
Oscar was born in January 2009, the labour was a long one and he was eventually born by emergency C section. All seemed well, we we’re happy parents.
However about an hour after birth Oscar stopped breathing, we don’t know how long this was for. Oscar was resuscitated but remained unable to breath for himself and spent the next 6 hours on a ventilator to keep him alive. Eventually he was able to breath for himself but he needed an oxygen mask strapped to his face for the next few weeks.
He spent a total of 6 weeks in the special care baby unit where he had test after test, he had various different medications via an intravenous drip. He had probes under the skin of his scalp to monitor his brain, probes on his chest and foot to monitor his breathing and oxygen levels. It was over a week before we could take Oscar out of his incubator and hold him.
He eventually had an MRI scan, his doctor told us that the scan showed (in his opinion) severe damage to Oscar’s brain. We were told he would likely be deaf, blind, be unaware of the world around him and that as he had stopped breathing before this would happen again and compound the damage already caused. A week after this we received the written MRI report which stated that his brain structure was normal.
A repeat scan has shown some damage but nowhere near as bad as we were initially told.
Throughout his stay in hospital Oscar was unable to deal with his own oral secretions and had to have suction on a regular basis, this left him very orally defensive. The doctors were unsure if he would be able to swallow by himself and if he would ever be able to eat.
Since his birth he has been fed via a nasogastric tube (NG tube), which goes up his nose down his throat and into his stomach.
Oscar has already been NG tube fed for all his 7 months of life. Long term tube feeding, apart from hindering Oscar’s own capacity to learn to eat by himself, is not free from complications which may lead to future inpatient treatments including the possibility of a G tube, which is surgically implanted into his stomach, and ongoing visits to try to regulate a normal eating and drinking pattern. Most children that have of a G tube or similar inserted, are likely to continue to receive further NHS treatments for years. Tube weaning is recommended to start earlier rather than later.
Oscar can now eat solid foods but still refuses to drink liquids.
We have located a clinic in Austria which specialises in weaning children of the NG tubes with a success rate of 95%, we are unlikely to receive funding for this from our local health service and will have to raise the funds for ourselves.
At the clinic Oscar would receive round the clock care with a multi disciplinary approach with, dieticians, speech and language therapists and physiotherapists.
Due to his lack of oxygen at birth Oscar is likely to have some problems but no-one can tell us what these will be and the severity of them.
Oscar is proving the doctors wrong he can hear and see and is definitely aware of the world around him. He is developing OK but may be behind in some areas.
Currently Oscar receives weekly visits from a community paediatric nurse and 4 to 6 weekly visits from other members of a multidisciplinary team that includes occupational therapist, physiotherapist, speech therapist and dietician, all to help and aid his development.
Although we don’t know how he will develop, one thing we can help him with right now is getting his NG tube out and him drinking.
Read more about the program at http://www.notube.at/
Oscar was born in January 2009, the labour was a long one and he was eventually born by emergency C section. All seemed well, we we’re happy parents.
However about an hour after birth Oscar stopped breathing, we don’t know how long this was for. Oscar was resuscitated but remained unable to breath for himself and spent the next 6 hours on a ventilator to keep him alive. Eventually he was able to breath for himself but he needed an oxygen mask strapped to his face for the next few weeks.He spent a total of 6 weeks in the special care baby unit where he had test after test, he had various different medications via an intravenous drip. He had probes under the skin of his scalp to monitor his brain, probes on his chest and foot to monitor his breathing and oxygen levels. It was over a week before we could take Oscar out of his incubator and hold him.
He eventually had an MRI scan, his doctor told us that the scan showed (in his opinion) severe damage to Oscar’s brain. We were told he would likely be deaf, blind, be unaware of the world around him and that as he had stopped breathing before this would happen again and compound the damage already caused. A week after this we received the written MRI report which stated that his brain structure was normal.
A repeat scan has shown some damage but nowhere near as bad as we were initially told.
Throughout his stay in hospital Oscar was unable to deal with his own oral secretions and had to have suction on a regular basis, this left him very orally defensive. The doctors were unsure if he would be able to swallow by himself and if he would ever be able to eat.
Since his birth he has been fed via a nasogastric tube (NG tube), which goes up his nose down his throat and into his stomach.
Oscar has already been NG tube fed for all his 7 months of life. Long term tube feeding, apart from hindering Oscar’s own capacity to learn to eat by himself, is not free from complications which may lead to future inpatient treatments including the possibility of a G tube, which is surgically implanted into his stomach, and ongoing visits to try to regulate a normal eating and drinking pattern. Most children that have of a G tube or similar inserted, are likely to continue to receive further NHS treatments for years. Tube weaning is recommended to start earlier rather than later.
Oscar can now eat solid foods but still refuses to drink liquids.
We have located a clinic in Austria which specialises in weaning children of the NG tubes with a success rate of 95%, we are unlikely to receive funding for this from our local health service and will have to raise the funds for ourselves.
At the clinic Oscar would receive round the clock care with a multi disciplinary approach with, dieticians, speech and language therapists and physiotherapists.
Due to his lack of oxygen at birth Oscar is likely to have some problems but no-one can tell us what these will be and the severity of them.
Oscar is proving the doctors wrong he can hear and see and is definitely aware of the world around him. He is developing OK but may be behind in some areas.
Currently Oscar receives weekly visits from a community paediatric nurse and 4 to 6 weekly visits from other members of a multidisciplinary team that includes occupational therapist, physiotherapist, speech therapist and dietician, all to help and aid his development.
Although we don’t know how he will develop, one thing we can help him with right now is getting his NG tube out and him drinking.
Read more about the program at http://www.notube.at/
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