tammy alice ria o'sullivan
TrachKid Profile
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Tammy was born on july 23rd 2006, at 5.06pm. Stright from birth she was found to have a stridor, it was actually quite scary as the midwife that was careing for me and tammy didnt evan no wot to do with her when she came out and had trouble breathing. Tammy was on scbu (special care baby unit) in warwick for the first two days until we had a bed avabile in Birmingham childrens hostpital bout an hour away. We got to Birmingham childrens on the 25th july 2006. She was just monitored for a few days till they could get her down to thetre. She then went down to thetre on the 28th july 2006. She went down to thetre around 1 o clock in the afternoon, well tammy was in thetre me and tammy's dad went down to the cafe for some lunch not that i could eat it for the worry, Then about half an hour after they took her to thetre mr kuo the ENT consultant was running round the hostpital to find us, he told us there was two choices. We could either cut one of the vocal chords, or we put a tracheoscomy in and wait for the vocal chords to heal. We made the choice we would rather she had the tracheoscomy in and wait for them to heal on there own, so thats what they did. When she come back from thetre bout an hour after we had seen the consultant she went on to icu (intensive care unit). She was on there for 2days and was doing really well which was excellant. She then went on to ward 11 in the hdu (high dependancy unit) for about a week and then went on to the normal part of the ward. She was put in a cubicle with a little girl called gorgina, who also had a tracheoscomy but for a different reason. We went though all the training together but they were a week a head of us because she had her tracheoscomy in a week before tammy. When they left the hostpital we lost contact sadly, but when we go to the hospital for outpatient appointments we pop on to the ward and i ask how gorgina getting on and she had her tracheoscomy out but had to have it put back in as she had a thoat construction then had the tracheoscomy out but the construction of her thoat collaspe. Well tammy was on the ward she had a MRI to find out the cause of why she was born with vocal chord paralysis, but all they found was a dandy walker cyst on the back part of her brain which controled the movements. They wasnt concerned bout it at this stage as it was only little and they can disperse on there own so they would just do regular MRI's. We enventally went though all the training nessercery like trachy change, tape change and resusatation. We had to do trails of taking tammy home it started off with taking her home for the day, then we took her for the day and the night then for the weekend if everythink went ok over the weekend we didnt need to go back. We ended up going back to the ward on the community nurses advice as everytime we were feeding her she would get really upset but when we got back to the ward they checked her over and said she was like that when she was on the ward sometimes and sent her home on reflux medicine. As from then of being at home everythink was going ok at home. Then we recived a phone call from the neruosurgens at Birmingham childrens hospital, we had to take her in as the dandy walker cyst on her brain had grown on the last MRI. So we went in to the hostpital in march 2007 she had an operation to cut a bit of bone away so the cyst could drain, but then over the weekend she had a collection of fluid on the top of her head so on the monday the surgon took her down to thetre again to insert a shunt to drain the fluid that way. It has worked to an exstent, as she still has her shunt in but it is just taking along time to drain all the fluid away so her brain can grow to the full space of her head. She went home after bout 2weeks in hospital. She was then fine for a few months and she came down with a chest infection, i took her down to warwick and they said she was fine evan though the sercrections coming out of her tracheoscomy were thick and green. Any way i took her home and then a few days later we were out in town and she was waking up from her sleep in her pram and she started crying and her eyes turned to the right and she was unresponsive, so i got her out her pushchair and carried on walking up the road with her as she came out of it and then she started doing it again but this time she stopped breathing on me. which was really scary. We then ended up in banbury hospital by ambulance where they checked her over fully but couldnt find anythink wrong. They also discharged her knowing what her sercreations were like. Anyway we went home and on the way home she started fitting again so i phoned my community nurse and she phoned an ambulance and told us we were going up to Birmingham childrens hospital. We got to the a&e and they checked her over and couldnt find nothing either then when the doctor walked out the room she started fitting so i called her back and she observed her doing this and then decided to keep her in, we was put on to the ward 10 and she went for a scan on her chest which told us she had got a really bad chest infection just as i thought. but warwick and banbury hospital took no notice of me. She was on the ward for about a week well she had IV antibiotics which helped her and cleared her chest infection up. They didnt start her on anti-fitting medication as they put the fitting down to the chest infection. she was then doin really well just plodding along then we came across some more fits when we was travelling to my auntie's wedding we got to the venue then called an ambulance as she was fitting every half an hour . We went to oxford radcliff by ambulance and was in there for about a week and they put her on to anti-fitting medication. They contacted Birmingham childrens hostpital and they wanted her up there to check her over just as she was there patient and they knew her better than oxford so we went back there and was there just over night and they were happy with what oxford had done and happy for her to go home. so we did. Coming up to may 2008 we went for an outpatient appointment with mr kuo ENT surgon and was told that from the previos ultra sound scan on the vocal chords it showed the was enough movement in the vocal chords to go for decanulation. So in july 2008 we went in on to the ward for decanulation. We went in on the 28th july 2008 she went down to thetre to have a scope to double check that the vocal chords were definatly working and when she come back from thetre came the great news that they were. So on the 29th july we sleacked her off in the morning and left it on all night and she done it fine with no problems. The dotor came round in the morning to see how she got on and he was happy that her sat's were fine over the process of being sleacked off. So he was happy to take the trachy out. The nurse came round about 12 to take it out, they took her down to the treatment room i couldnt go because i was so nervous that she wouldnt be able to cope without it and very emotional. Her dad went down with her and he was so pleased because he took the trachy out himself. When she came back to me after she had had it out she was crying which started me off but it was so good just to hear her voice. The day after she had her trachy out we were on our way home, it was really scary for me to be taking her home without her trachy in, but nice not to have to carry her emergency stuff round with me. We were so shocked to be going home as we were told the process of having a trachy out would take up to two weeks but we done it in just four days i was so proud of her. In the whole 2years she had her trachy she only pulled it out twice but when she did it was so scary but it was a good job we were at home and had her trachy stuff ready to hand. She has had her trachy out nearly a year now and she has been fine without it. At the moment in time she is still without her trachy but she recives alot of physio as she has got developmental delay due to the cyst on her brain. She has been rollin constanly for the past 5months is near enough there with her sitting up and bears bits of weight on her legs. At home she has a standing frame what she has to go in for about an hour a day, also a panda chair for feeding and playin and a bath seat so she can sit up in the bath and play. We are awaiting a specalist bed as the bed we got her she keeps rolling out of. She is attending a special needs nursery where she has been goin for nearly a year and she loves it. It is also nice for me to have a break for a while as when tammy had her trachy in we got 4hours a week where a community nurse would come in and take over tammy care so we could have a break and spend time together, and that stopped when she had her trachy out. I am so proud of my little princess she does things in her own way and in her own time but i still love her i think i love her more because she has special needs but she is my little super star and i love her to bits i wouldnt change her for anythink. This is the way god wanted her and i have learned to accept that. Will keep you all updated on her progress
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- 2 years 31 weeks
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