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My Life Story.

Guest amz_lovingyou

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AMYS STORY (Through the eyes of her Mum Tracey) Amy Lee Roberts was born on Mother?s Day 10 May 1992 at 10:33am by cesarean section at Bega District Hospital at 42 weeks gestation. I was unaware there was any problem with Amy as I had a full anaesthetic. When I awoke I knew there was something wrong, as my husband John was not with me and the nurse told me she would get him for me. I filled up with tears not knowing whether my baby was dead or alive, it was awful. John walked in and said ?We have a beautiful baby girl, but she has a few problems. She is having trouble breathing and her hands and feet are around the wrong way, she is going to have to go to Sydney for treatment.? All I could think of was what a Mother?s Day. One that I will never forget. The only thing we could hope and pray for was that she was going to be all right. Amy was the little girl we had waited years for. I was on fertility drugs to fall pregnant. My doctor Dr Nick Theris was wonderful. He couldn?t get a tube down her little throat so he the theatre and maternity sisters? hand bagged her oxygen until the Child Flight helicopter arrived. I was so excited when they took me down to see her, she was so beautiful. As soon as I saw her I knew she would make it. Amy just had that look in her eyes they were so strong. The priest arrived and baptized her, as she was being baptized her heart rate was dropping very fast, everyone was just looking at her and I was saying to myself ?Come on Amy you can do this. I?m your Mum and I haven?t even got to touch you yet.? The priest blessed her and the next minute her heart rate and saturation levels started going back up, it was a miracle. The medical team then arrived. The nurses took me back to my room while the team stabilized her for the Trip to Sydney. They said they would bring her to see me before they left. They brought her in; she was in a humicrib. She was laying on her tummy facing the other way. As they went to take her out they handed me two photos of her. Amy lifted her head and looked at me it was wonderful, it was as if she was saying ?Bye Mum see you in Sydney and we will have a cuddle then, I am in safe hands.? Well, the next week was the longest week of my life. John was still in shock as he was in the Theatre when she was born. The week was finally up and we were off to Sydney to see our little girl who now had a tracheotomy to allow her to breathe. It was the longest flight. It only takes 1½ hrs but it seemed an eternity. My mother came with us as well. Tony and Jenny, John?s sister and brother-in-law picked us up at the airport and took us to the hospital and I could feel my foot steps getting faster and faster as I got nearer to the door. Jenny said we were all trying to get through the door at the same time. As I got to intensive Care Ward at Camperdown Children?s Hospital, I looked through the window and I knew which baby was Amy. When we opened the door the sister asked could she help us and I said ?I?m Amy?s Mum and this is her Dad.? I ran over to her, she had the most beautiful skin with this massive trackey in her throat. She had splints on her hands and legs and a feeding tube coming out of her nose. The nurse helped me to pick her up and I just held her and held her, knowing from that minute on, our lives were going to change forever. To enable us to take Amy home we had to learn so much. We had to learn how to change her trachey tube and keep it clear so she could breathe, how to feed her and change her nasal gastric tube, how to give Physio to her hands and feet and on top of that learn how to be a Mum and Dad. Well we learnt it all and it was very hard and also frightening and very trying at times. Six weeks later we got to take Amy home. We were fitted out with all the medical needs we required (except a doctor and a nurse). When we walked out of the hospital with her I froze and I thought ?My God, she will probably die tonight. How are we going to sleep and know whether she is breathing or not?? Well we continued on our journey and we flew home, John nursing her and me with the motor on the suction machine going in case I needed it. (How I wish I knew then what I know now). The first two weeks home wasn?t real good. I sat up nearly all night and watched her breathe. I kept wetting my finger and would put it over her trachey so as to feel the air coming out. I probably suctioned her fifty times a day. Things started to get a little better until our first Trachey change. It was so nerve racking being 600km from the Children?s Hospital if something went wrong. Off we went to our local hospital and with our local doctor being there we did the change. All went okay till she started making a funny noise which we hadn?t heard before. Believe me, we had heard them all. Our doctor told us not to worry. I started walking out with her. John was talking to the Doctor. I did not know they were worried but they had realised that a pediatric tube instead of a neonatal one had been used. We went home and waited for our doctor to ring Sydney to see what to do. He rang us and said the large one had to come out immediately as it could cause her lungs to collapse. Sydney suggested we bring her in to have it changed but they had no idea that we lived so far away. Not another helicopter flight. Then we remembered another little boy in our area that had a Trachey. Luckily they had a spare and we changed it back at the hospital (I always double checked my items from the appliance center from then on). From that day we took one day at a time dealing with her nasal gastric tube coming out at the 2am feed. We would wait about an hour before we could get it back in as she would gag and bring up her feed we had just given her. Just to see her wake up of a morning was a wonderful feeling knowing she had survived another day with us. We were so lucky we had so much family support. My mother-in-law learnt to do the suctioning and was there every Monday morning to help do the Trachy change. Every thing went well for a while. My Mum lived with us and was a great help to me as looking after Amy was a 24hr job and for me to try and do anything else was very hard. She was wonderful. We were due to go to Sydney for Amy?s first check up. She was now 5 months old the hospital had told me at first they wouldn?t operate on Amy?s feet till she was about 2 yrs old. They were really surprised when they saw her as she had grown so much and was quite chubby. They decided to operate on her leg and at the same time give her a gastrostomy button to help with her feeding (what a disaster that was). The first leg was operated on the 20th October, the stomach tube put in on the 25th and the other leg on the 27th. What a week. She was so good and such a brave little girl. I spent a few weeks there and then went home with Amy, both legs in plaster up to her thighs. I went back to Sydney the week before Christmas and had the plaster taken off. I came home with a pump to help with the feeding. Wasn?t that a pain! Amy?s gastostomy was a catheter with a H bandage so it hung out of her stomach. I used to feed her 25ml an hour for 24hrs of the day. Feeding her on the pump became a nightmare. The reason I was only giving her 25mls an hour was she had a bad reflux and having the trachey and going into a coughing fit would make her vomit and dry reach all the time. When Amy was 13 months old I had to go back to Sydney as I was having trouble with her feeding and vomiting. Dr Shun at Camperdown hospital decided to do a funderpliocation on her, which was tying a knot in her stomach, he then put a tube in called a Mickey. It had 3 prongs on it with a long tube that went down into her small intestine. It had a balloon on it to keep it in place. At first it was good, but then I started having problems with it. By August I couldn?t get any milk to go in and the alarm kept going off on the feed pump. I was really worried so I got in contact with Sydney and they told me to put some coke down it with a syringe. I had already tried that and had no success. I felt that the tube was either blocked or twisted, but they told me that couldn?t happen. I then took Amy in to see my own doctor. While I was there he rang Dr Shun. Its funny, but I got the impression that they thought I was a stupid mother, not knowing what I was talking about, but I knew. I had been with her all the time and knew that something was wrong. So on the next plane off we went to Sydney and they put Amy on a drip, as she hadn?t had a feed for a few hours, poor little thing. They had lots of trouble getting a cannula in. Next morning they did a barium swallow to try and find out the problem. I was watching and up on the screen came the tube with a knot in the bottom of it. They couldn?t believe it. They then put in a gastomony button. FANTASTIC. It was great and still is to this day. Whenever we had any problems we could deal with it ourselves. Once, our younger daughter pulled it out and we just put in a new one and continued on feeding her. We got rid of the feed pump and just feed her with a syringe. We just wish she had had one from day one. It would have saved a lot of trauma both for Amy and for us. We kept going backwards and forwards to Sydney for appointments and the Orthopedic Doctor decided to operate on her legs again to try and straighten them. That was done in February 1995. We were in Sydney for a couple of weeks and she was in plaster for 3 months and pushed herself around in a wheelchair. She got her plasters off and was fitted with AFO splints for her legs. Amy took her first steps in July 1995 - what a day! People were looking at us as if we were all crazy, but they had no idea what it meant to us for Amy to be taking her first steps at 3 years 2 months of age. .. Things ran quite smoothly for a while. I had another little girl Meg Elizabeth born 21 Feb 1994. (Thank God for my Mum). Meg was beautiful and fitted in well. I had 6 monthly check ups in Sydney for Amy?s trachey. At the end of August Amy had a high temperature and got sick and started twitching. Dr Nick put her into hospital to monitor her. I thought what now! After monitoring her, he decided to send her to Canberra, wasn't that a trip and a half. They started to treat her for epilepsy, but I knew she didn?t have that. It was only because of her high temperature. They sent her for a scan that had wires on her head. It was really hard being there because not all the staff knew how to look after her trachey which was a bit scary. I wasn?t even offered a bed or anything to eat, but the mums that were breastfeeding were given everything and I couldn?t get a bed in case a Mum came in. I couldn?t leave Amy as I was worried what might happen to her. I got to the stage that I was so tired I rang my husband and got him to come and stay the night so I could go and get some sleep. I slept in a chair in the corridor and John slept in a chair beside Amy. Early in the morning a nurse went to give Amy some medication and John jumped up, he couldn?t believe his eyes. She had a syringe with a needle on it trying to put medication into Amy?s button. John said ?What are you doing!? and she replied ?I haven?t seen one of these before.? John said, ?You would think you would ask first.? They finally worked out it was due to her temperature and we were allowed to go home. Everything went really well for a while until April25th. Amy had a really bad cold and a really dry cough which caused her to bleed from her trachy. She was put into our local hospital but the bleeding was getting worse so Dr rang Sydney and the Helicopter was on its way to pick us up again. It arrived about 10pm and they took her to theatre to try and put a drip in and sedate her but that didn?t work. We left for Sydney in the big fog at 12 10am. I was so scared, I hadn?t been in a chopper before and Amy?s bleeding seemed to be getting worse. It was also my Wedding Anniversary. We arrived in Sydney at 2.20 am and she went straight to theatre, they found she had a tear on the left side of her trachea. They fixed her up and we were home in 4 days. We went back to Sydney 12 May to have her Trachey out on the 16 May 1996, but I knew she wasn?t ready for it as each week when we changed it, she couldn?t breathe very well, her colour wasn?t real good and we still had to use oxygen. But they wanted to do it. They sat her up in bed and cut the tapes and out it came. She was okay for about 30 seconds if that, and she looked at us as if she wanted help. It was awful. Her chest started caving in and her lips started going blue. They let her go for a few more seconds. John knew it was not going to work and he reached over and put it back in. All Amy could do was say thank you Dad in Sign Language. We all went back home the next day very disappointed. I was back again in June 1996 for an appointment with an ears, nose and throat surgeon. He told me he was really sorry but he had been around the world and had seen children like Amy and there was nothing he could do. He hadn?t even really looked at her. I was really upset, but back home I came. When I had been at Westmead I had heard the staff talking about a Professor Silenc. He and his wife had done a lot of research on Arthrogryposis (Amy?s condition) and he was fantastic. I got in touch with him and got an appointment. He went over Amy for about 3 hrs and then sat me down and laid it on the line as to what should be done. He told me that there was a doctor out there that could fix Amy by the time she was a teenager, but I would have to travel a long way. I thought I would have to go to America and he said ?Adelaide to a Mr. David David? and with that I said ? is that all!? and he said that he would arrange an appointment for me in about 6 weeks time. NEXT AMYS VISITS TO ADELAIDE - 1996 Off we went to Adelaide, Amy; John?s Dad and myself. We had 12 different appointments with different doctors before we saw David David. He was amazed that no one had done anything for her fused jaw to try and get some movement. We took her to a planning meeting and after discussions with all the parties they decided to operate on the next Tuesday. I started to get really nervous, but finding someone that was going to do something was wonderful. Having John?s Dad with me for support was fantastic. John flew over for Amy?s Surgery and we saw a genes doctor who could not tell us whether Amy?s condition was genetic or not we made the decision not to have any more children which was sad because we had wanted a large family but strange things happen and I came home from Adelaide expecting our 3rd child Tayla Patricia who was born in July 1997. The surgery Amy was to have was called a TMJ release, which was taking 2 ribs and replacing the jawbone with them by screwing the new bone in. It was such a shock when we saw her. Her face was like a balloon, so swollen and her little eyes were closing as each minute passed. It had to be done to give her a chance to learn to eat and talk. Most kids stay on drugs for days, but Amy had them stopped 9am the next morning and that day she went back to the ward. We suffered a few hick-ups over there on the Tuesday after the operation. She started vomiting up coffee coloured fluid which after consultation with a gastrologist, and another trip to the theatre we found she had a bleeding ulcer. Poor little thing. She was put on medication and because of that she is given medication prior to any operations. I was in Adelaide for 6 weeks and went back in May 1997 when she was going to have her jaw extended by putting extractors in and turning them to lengthen the jaw so as to enable her to have her trachey out. But, when she went to Theatre they had to stop as the bone was too soft and we were told they would do it in a couple of years. So home we came but the jaw fused again and in January 1998 we had the TMJ jaw release done again and she bounced back really well from that operation. In April 1998 they decided to do the extension again, a four-hour operation. I was waiting in the waiting room knowing the longer it took the better chance they had of getting the bars in. Well it worked and when I saw her what a shock it was. She had to have the frame on her face and the screws had to be turned every day for the growth to happen. They turned ½ mm each day. She was so good and they turned it till they had extended it 2cm. It was unbelievable. The difference it made to her appearance, having a chin that she didn?t have before. Finally we got home after 6 weeks. We also had left Tathra and had moved to Urunga, which was a lot further to travel. She still had the bars in and she went back to school and 6 weeks later we went back to Adelaide to have the bars off. She looked so different; we were only there for a week and then back home. Over the next six months her jaw fused again. Amy is now 7 years old and we have just arrived home from Adelaide having had a TMJ release done again with 2 more ribs being put in. Hoping this is the last time for a while, I will keep moving her jaw and try to get her eating. 12th May 1999 she had her legs operated on to try and straighten them with a bilateral distal topical derogation osteotomies AO small plates. She now has to learn to walk again and all we can hope for is that it will be some time before we have to go back. We certainly would enjoy a bit of family life. 8th October 1999 back to Adelaide and Amy had her tonsils out. She still has the trachy and is still tube feed. Maybe year 2000 will be her year. Tuesday 4th April Tracey and Amy back to Adelaide first appointment Wed 5th 11an for a 3d scan usually Amy has to have an anaesthetic to have this done but she was so still they didn?t have to put her out a big achievement for Amy 2pm off to the ENT Surgeon Mr. Jay and 3.30pm Craniofacial Dr. Thursday 6th 8.30am Dr Luks the Dentist 10am blood tests and 12md Dr Barier Orthodontist 3.45 Mr Cundy the Orthopaedic Surgeon Friday 7th Clinical Photography at Foundation Studios, 10am Mr David and 12md Dr Tomkins the Anaesthetist Saturday 8th 8.30am the planning meeting at the Craniofacial Unit All the Doctors meet and decide the next operation for Amy. Tuesday 11th April Dr David will do his surgery again and give the jaw a good manipulation and take out the old bone and try and get the jaw moving and the orthopod will take out the pins and plates out of her legs. The decision not to do any thing with her mouth at this stage because of her 2nd teeth not yet being through. The Orthodontist thinks waiting more than 2 years will be enough but David David thinks not till she is 12 years old The operation went well Amy was a bit flat for a few hours but didn?t have to have a blood transfusion this time. Tracey and her flew home 20th April 2000 The next BIG event will be the 7th July when the Trachey is going to come out Please God.

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