Joshua Degnan

Born December 12th 1999

Joshuas Story

Hi my name is Karen. I have two sons Connor [7] and Joshua [2]. This is my story about my son. Joshua was born a week after his due date in Glasgow Royal Maternity. He weighed 7lb 2oz and seemed a healthy baby but when Joshua was 1 day old a nurse noticed that he was breathing to fast. He was taken into the special baby unit and put on oxygen and given antibiotics but his breathing still got worse. Then his heart began to fail and one of his lungs collapsed, he then got put onto a ventilator. When he was 4 days old he was transfered to The Queen Mothers Hospital. They did scans and test on Joshua and discovered that he a aneurisym in the Vein of Galen. We had never heard of this before. A couple of days later the doctor told us that they were going to send Joshua to Great Ormand Street by air ambulance. Joshua’s dad William had to stay at home with Connor because it was a few days before christmas and we wanted things to be as normal as possible for him. The flight down was really bad and Joshua got worse. On the third day of being there Joshua was to go through with his first operation and the doctor told us that Joshua’s organ failure was too far advanced. She said that if she went through with it he would only survive a short time. I asked what would happen next and was told that if I had stayed there they would make him comfortable and switch off has machines. There was no way we were giving up on our son without even trying. I said that I wanted Joshua back home to the Queen Mothers. We both flew home the next day. Myself and William didn’t know what to expect when we went to the hospital but the doctors told us that they were not giving up yet. Joshua went into theatre on 24th Dec 1999 but it was unsuccesful. They again tried on boxing day and it was a success. The same prosedure was repeated another three times and on Fri 19th Fec 2000 Joshua finally came home. Joshua was in and out of hospital with infections and a few times has to go back on a ventilator. When he was one and a half he has to go through the same prosedure again another 3 times and after the 3rd time doctors told us that there was nothing else they could do. We had to take things day by day and didn’t know how long we had left with our son. Joshua proved to be a fighter and on Wed 25th Aug 2001 he went through the prosedure for the last time. Doctors told us that they didn’t expect him to survive so long and thats why they tried one last time. Joshua is two and a half now and is off all his medication. He still gets feed through a nasal gastric tube but he has started to eat some custard now. Joshua can sit up by himself now which was such a great thing for us to see. Joshua is a happy boy and loves going to nursery. We cannot thank the doctors and nurses enough in the Queen Mothers and Yorkhill Hospital both in Glasgow for all the care they have given Joshua and all the support they gave our family.

It’s now November 2003 and I thought it was about time I updated Joshua’s story. Last September Joshua started taking seizures. He was only having one every couple of weeks. Then on boxing day he was taken into hospital because he started taking about five a day. He had a tempory drain put in to drain all the fluid from his head. Things were good for a few weeks then the seizures came back. With medication we managed to control them but they didn’t stop. Joshua started sleeping more and didn’t move about much. I thought it was all because of the medication. Then at the begining of June Joshua had a really bad seizure. He was taken back into hospitaland doctors did a MRI scan. The result of the scan was that Joshua’s jugular veins were all blocked. They told us there was nothing they could do for him. He had a couple of lumbar punctures done to try and drain some fluid but they didn’t make any difference. We took Joshua home with the horrible feeling of not knowing if he would wake up each morning. Joshua got bad very fast. He couldn’t see, move or even cry. Joshua went into a coma for a week. When he woke up there was no change. His body startrd to swell and most of the time he just slept. We were attending the hospital every day because he was so bad and on one visit the doctor told us that he had pneumonia. I took him back home and nurses came out every day to give him IV antibiotics. He pulled through and we kept doing everything the same. Joshua was on oxygen all the time. About 4 weeks later his breathing got really bad and I took him back to hospital. He had pneumonia again. We had already decided that we didn’t want him to be resusitated, he had suffered enough. Joshua stopped breathing for a couple of minutes but started again himself. We were determind that he wasn’t going to die in hospital so they got us rushed home.

Peacefully at home four days later on Friday 1st August 2003 at 10.40am Joshua lost his fight. His little body was just so tired. We are so proud of our beutiful son. We had three and a half wonderful years with Joshua and will always have our memories.

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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