Kian had 3 seizures in the space of 8 hours on wednesday. Tuesday night he did have a little sickness that came completely out of the blue. He then got a raging temperature that I tried to manage the way we normally do, but a little while later it came back and Kian fitted. Always it is a horrible thing to see. I didnt completely expect the second one as there was no temperature. I didnt have to use midazolam for Kian to come out of them but he went a little over 5 mins. There was 5 hours between the 1st and 2nd then it was 3 hours later he fitted again. Those 5 minutes that you are waiting to see if he can come out of a fit by himself without meds is a long old 5 minutes. I was contemplating calling an ambulance with them being quite close together for Kian. He came out of it and I took him straight to hospital. We live 5-10 minutes from it which I never contemplated would come in so handy. I called Kian's paediatrician before we left as we had an appointment arranged that morning, and to let her know what had happened.
At the hospital though he was a fraction of what his temp had felt previously he was 38.9. They gave a dose of neurofen and took his temp a little while later and it had actually went higher.
Eventually his temp came down and we got a urine sample using a pad in Kians nappy. We were referred to childrens assessment unit. They told us the sample showed infection but they wanted us to do another straight into a bottle. We were at the hospital from 9.30 - 5.30pm and did not get another sample. We agreed to go home and get a sample there and take back to hospital the next day. They could feel something on Kian's chest but said no more about it. They had been in touch with Kian's paediatrician and she said that if there showed a big infection (neumonÃa), then that was why he fitted and we shouldnt up his meds, otherwise it was up to ourselves to decide to up from 5ml to 6ml.
We decided to up the med. It is a very hard decision to make for parents as ideally I dont want Kian on meds which possibly make him more sleepy, affect his development even more and can cause behaviour problems but Kian doesnt have this many fits, even when he is poorly!
I was at a meeting where I and another parent are giving our opinions of a new service being created in our local authority. I spoke of how Kian had been poorly, when I mentioned his meds, and how at the national conference we were advised that kidneys should be monitored, and our Dr, (who I do have alot of time and respect for) decided instead of doing a yearly test said we will wait until something crops up. Someone at this meeting said "they are not managing Kian's health but they are using risk management". It took what that person said, who has never met my child to realise that is exactly how I feel. WHY do we have to wait until something goes wrong?????????? We had an agreement between the Dr that if Kian fitted twice we would up his meds, now he had 5 and the decision was still up in the air. Dont get me wrong, medicating isnt the answer to everything but I know Kian. I know with the syndrome there is a good chance of Kian outgrowing his fits, and I pray for this to happen. But fits can be dangerous- Fact-
I have got used to the fits but I dont want to become too complacent that I dont recognise he needs more help, and it is very hard to make that opinion while your child is fitting.
Craig came home that day from work, as most people know he normally only gets home on the weekend. The next day as our little precious being was lying in his travel cot where we could see him constantly, Craig said he didnt think Kian would have a long life. This isnt the first time this conversation has came about and Im sure it wont be the last. Some people may think that is a strange thing to say, but in our world you dont know what is round the corner, and though that can happen to anyone, we become to expect things to go wrong. Then the next day at the meeting I speak of Kian and Craig and say Im not expecting Kian to be going anywhere. Another parent who has had many battles to fight says that she is the opposite she doesnt know whether her child might go at anytime. That is what it can be like in the everyday life of someone with a disabled child. If some professionals could only understand that! I dont expect Kian to be going anywhere, and the main reason being I cant imagine a world without my little Kian. Kian who after so many days of looking drained and out of it, has smiled all day. He has been full of mischief, he made it know to be when he wasnt happy or when he was really happy.
Is he worthy of "risk managment", I think not!
I feel my blogs can be serious and sad at times and I am hoping they do become happy and witty, because Kian is a happy little person and I do enjoy him so much. But this is our journey, as it is!
Monday 31 May 2010
Monday 17 May 2010
Confused!
Kian had another seizure last monday, his known previous one before that was Feb. He was absaloutely fine on the monday morning and I took him to nursery as norm. A week or two before he had had a cold and there does seems to be lots of colds and bugs going around. At 1pm I got the call from his nursery to say he had had a fit. I got to the nursery within 5 mins. They had administered the midazolam though by how they describe he was possibly coming out of the fit before they gave it. It was the first time that they had saw him have one and I think it is very difficult those first times knowing what to expect. They said he had been happy as normal beforehand babbling and playing and then had just flopped down. They looked after him really well.
Because he did not seem poorly, I and his physio (who was co-incidently at the nursery) spoke of whether he was ready for an increase of meds due to growing. I called our paediatrician to see if we should up meds. It is our normal agreement that if Kian has 2 fits we up. His first one being Feb. She decided not to as his dose it quite high of what he is on. My next appointment has been brought forward where I will discuss this. He will be weighed there and see if there is a growing need to up his meds. I think we should have got him weighed last week and discussed meds after his weigh in. Dont get me wrong Kian is growing though Im not sure it has been a rapid growth spurt, as we know it is hard for our children to put on weight. I more than make up for that for Kian!
That night we had an awful night with Kian. He had a raging temp, though thankfully he didnt fit. With stripping down, damp compress, calpol and eventually neurofen, the temp passed but he couldnt settle. We got him to the doctors that morning. The dr said she thought he had a really bad infection but wasnt sure where. His ears appeared fine. His throat was a little pink. She said his legs were really cold and though she didnt think it was meningitis, we had to be aware that could be a sign. She gave us antibiotics and asked be to get a urine sample before the antibiotics were started. The sample was not back when I was told to ring so I will hopefully get the results today.
ENT appointment was yesterday. Our appointment was very rushed as they were running quite behind and Craig had to get back to work. Anyway, we discussed the palate and he had a little feel as Kian had fell asleep. He thinks it feels normal, but there are other ways of looking but do we go down that route now? And would it actually help? Kians hearing test was terrible, alot of the time he is just not interested. But as it happens he has fluid in both of his ears. His one grommet left in is on its way out. Do we go ahead with more grommets or see if it clears up itself? We have said yes to more grommets, with the thinking that by the time the op date comes through, if the fluid has gone then we dont go ahead. Last year we waited and the fluid didnt clear, so we are going to try it this way. I dont want Kian to go through having an anethestic again, it was awful, but when Kian first had grommets he went seizure free for 9 months. Maybe co incidental, but it possibly did help. Also Ive been told that with glue ear you hear echoey sounds, if it is like that for Kian it must be so confusing.
Sometimes I wonder if people think, you have a disabled child, just accept it and stop trying to find things to mess on with Kian. I am proud of my little Kian, his disabilty is part of him and that is not going away. But there are so many disadvantages that Kian has that I will look into as many things as I can. If it is something that myself and Craig think is worth a try then we have to try, but we always think of all the outcomes and take on expertise of professionals as well as other parents opinions. There are no magic wands for our children and no miracle cures. Kian has alot of hope and alot of love around him and that is ultimately the most important thing!
Because he did not seem poorly, I and his physio (who was co-incidently at the nursery) spoke of whether he was ready for an increase of meds due to growing. I called our paediatrician to see if we should up meds. It is our normal agreement that if Kian has 2 fits we up. His first one being Feb. She decided not to as his dose it quite high of what he is on. My next appointment has been brought forward where I will discuss this. He will be weighed there and see if there is a growing need to up his meds. I think we should have got him weighed last week and discussed meds after his weigh in. Dont get me wrong Kian is growing though Im not sure it has been a rapid growth spurt, as we know it is hard for our children to put on weight. I more than make up for that for Kian!
That night we had an awful night with Kian. He had a raging temp, though thankfully he didnt fit. With stripping down, damp compress, calpol and eventually neurofen, the temp passed but he couldnt settle. We got him to the doctors that morning. The dr said she thought he had a really bad infection but wasnt sure where. His ears appeared fine. His throat was a little pink. She said his legs were really cold and though she didnt think it was meningitis, we had to be aware that could be a sign. She gave us antibiotics and asked be to get a urine sample before the antibiotics were started. The sample was not back when I was told to ring so I will hopefully get the results today.
ENT appointment was yesterday. Our appointment was very rushed as they were running quite behind and Craig had to get back to work. Anyway, we discussed the palate and he had a little feel as Kian had fell asleep. He thinks it feels normal, but there are other ways of looking but do we go down that route now? And would it actually help? Kians hearing test was terrible, alot of the time he is just not interested. But as it happens he has fluid in both of his ears. His one grommet left in is on its way out. Do we go ahead with more grommets or see if it clears up itself? We have said yes to more grommets, with the thinking that by the time the op date comes through, if the fluid has gone then we dont go ahead. Last year we waited and the fluid didnt clear, so we are going to try it this way. I dont want Kian to go through having an anethestic again, it was awful, but when Kian first had grommets he went seizure free for 9 months. Maybe co incidental, but it possibly did help. Also Ive been told that with glue ear you hear echoey sounds, if it is like that for Kian it must be so confusing.
Sometimes I wonder if people think, you have a disabled child, just accept it and stop trying to find things to mess on with Kian. I am proud of my little Kian, his disabilty is part of him and that is not going away. But there are so many disadvantages that Kian has that I will look into as many things as I can. If it is something that myself and Craig think is worth a try then we have to try, but we always think of all the outcomes and take on expertise of professionals as well as other parents opinions. There are no magic wands for our children and no miracle cures. Kian has alot of hope and alot of love around him and that is ultimately the most important thing!
Saturday 15 May 2010
History continued - My dad
My dad suffered from Parkinsons Disease for years. He just lived with it, and it became normal that my dad had this illness. He could be quite funny but he could also have quite a huff if he wanted to. ??? I wonder where I get my huffiness from!
I could speak loads of my dad but I will try to keep it brief. He was over the moon when I found out I was pregnant. Even with his illness he was a massive help to us when Kian was born, and Kian has such looks and tendencies that really remind me and my dearest of my dad.
Now I am in the world of disability, Ive come across so much that would have benefited my dad. It is a shame that not many people take on the responsibility of letting people know what is out there to help and make life more enjoyable. My brother cared for my dad for 12 years, I imagine a very hard task, but I cant imagine anyone else who would have done it as well.
When Kian was diagnosed, as I have blogged before, I chose not to have the blood test on myself immediately. I wanted to focus on what Kian needed. When we thought more on the blood test and myself and Craig felt ready to have it, I would not have been surprised if the blood test came back with myself being a carrier. This I probably thought because of my families history. The test came back showing our chromosomes "normal". Again as I have blogged before, my dad had passed away 3 days before our results came. I would have liked my dad to have known the results. Kian was 17 months then. I know he wont remember his grandad but I know that my dad does live on in Kian. I think my dearest agree too.
Im not sure if I was relieved that I was not a carrier of the gene that can create WHS. Another parent told me that they felt if they had carried the gene, whs happening to their child would be be more understandable. Spontanius is how it was described to my family. I know of a family who did not do the test and have went on to have a healthy child. I know of parents who conceive and then have a test to see if their child has any problems. It is a hard, but personal choice to all. I dont think there is a right or wrong.
When I told Craig of hearing of a relation to someone I know miscarrying a child with WHS, he said " We were meant to have Kian". Im not sure of what I feel when it is said disabled children go to special people, we are not perfect, but I know that we were meant to have him, my Kian David Henaghan!
I could speak loads of my dad but I will try to keep it brief. He was over the moon when I found out I was pregnant. Even with his illness he was a massive help to us when Kian was born, and Kian has such looks and tendencies that really remind me and my dearest of my dad.
Now I am in the world of disability, Ive come across so much that would have benefited my dad. It is a shame that not many people take on the responsibility of letting people know what is out there to help and make life more enjoyable. My brother cared for my dad for 12 years, I imagine a very hard task, but I cant imagine anyone else who would have done it as well.
When Kian was diagnosed, as I have blogged before, I chose not to have the blood test on myself immediately. I wanted to focus on what Kian needed. When we thought more on the blood test and myself and Craig felt ready to have it, I would not have been surprised if the blood test came back with myself being a carrier. This I probably thought because of my families history. The test came back showing our chromosomes "normal". Again as I have blogged before, my dad had passed away 3 days before our results came. I would have liked my dad to have known the results. Kian was 17 months then. I know he wont remember his grandad but I know that my dad does live on in Kian. I think my dearest agree too.
Im not sure if I was relieved that I was not a carrier of the gene that can create WHS. Another parent told me that they felt if they had carried the gene, whs happening to their child would be be more understandable. Spontanius is how it was described to my family. I know of a family who did not do the test and have went on to have a healthy child. I know of parents who conceive and then have a test to see if their child has any problems. It is a hard, but personal choice to all. I dont think there is a right or wrong.
When I told Craig of hearing of a relation to someone I know miscarrying a child with WHS, he said " We were meant to have Kian". Im not sure of what I feel when it is said disabled children go to special people, we are not perfect, but I know that we were meant to have him, my Kian David Henaghan!
Saturday 1 May 2010
My History
I remember when my mam first got her wheelchair. It wasnt the norm to see friends parents with wheelchairs. It wasnt that my mam had a disability. Or that is what I thought at the time. She was waiting for a transplant. At first it was a heart and lung, but when it came to her having it, she was given a double lung. I must state that my mam was a smoker. She had gave up when her health began to deteriate but by then it was quite in a poorly state. My mam couldnt walk to the gate from our front door without becoming breathless.
One false alarm and then she was in having the transplant that we thought would make the difference. Alot of pressure was put on our family and I think that is when the signs of my sisters epilepsy began. She was doing alot of running around and if I was her, I would have felt a great responsibility. Emma had shown signs of fainting and when staying overnight with our mam she had a seizure which I think began the diagnosis of epilepsy. Previously beforehand she had been taken in to hospital and I remember a cousin coming to school for me. Head of departments had came into class for other people before but never for myself. That time it had been for me. I thought the worst. I thought something had happened to my mam. It wasnt. It was my sister who was in hospital and she was ok and being monitored. I felt a relief. As an adult now I can think I should have been worried about everyone equally but at that time for some reason I thought it was bad news about my mam and I was pleased it wastnt.
There was one girl at school who used to always make a point of asking after my mam. I never realised she was kind of in the same situation.
We got a second call for our mam to go for her transplant. After the transplant, myself and my brother were eventually allowed to visit our mother. At first it was just our dad and my sister for health and hygiene reasons. Nothing prepares you for the Intensive Care Unit. You go in wash your hands and there was our mother lying in a bed with tubes everywhere. It was heartbreaking and when I cried I remember a nurse crying. That possibly gives me a bit of hope in the NHS system.
My mam eventually went in a ward and was givin exercises to work on. We saw her and she wrote us letters telling myself to do well on my duke of edingburgh that I was doing at school and I cant remember what she said to my brother and sister. We then got told to expect our mam home for christmas, she had been away since July, this was good news.
My dad came home and said that he had been told our mam wont last the night, this was October. I cant remember the exact words but it is more caring than blunt how our dad told us. Im not sure how I slept but my dad came into my room roughly at 8am and told me my mam passed away at 00.03 that morning. I didnt know what to feel. My friend knocked on my door at 8.30 for school as that is how unexpected it was for my mam to pass. I tell her the news and I hug her. We have been friends for a long long time. That is my first main tragedy of life!
One false alarm and then she was in having the transplant that we thought would make the difference. Alot of pressure was put on our family and I think that is when the signs of my sisters epilepsy began. She was doing alot of running around and if I was her, I would have felt a great responsibility. Emma had shown signs of fainting and when staying overnight with our mam she had a seizure which I think began the diagnosis of epilepsy. Previously beforehand she had been taken in to hospital and I remember a cousin coming to school for me. Head of departments had came into class for other people before but never for myself. That time it had been for me. I thought the worst. I thought something had happened to my mam. It wasnt. It was my sister who was in hospital and she was ok and being monitored. I felt a relief. As an adult now I can think I should have been worried about everyone equally but at that time for some reason I thought it was bad news about my mam and I was pleased it wastnt.
There was one girl at school who used to always make a point of asking after my mam. I never realised she was kind of in the same situation.
We got a second call for our mam to go for her transplant. After the transplant, myself and my brother were eventually allowed to visit our mother. At first it was just our dad and my sister for health and hygiene reasons. Nothing prepares you for the Intensive Care Unit. You go in wash your hands and there was our mother lying in a bed with tubes everywhere. It was heartbreaking and when I cried I remember a nurse crying. That possibly gives me a bit of hope in the NHS system.
My mam eventually went in a ward and was givin exercises to work on. We saw her and she wrote us letters telling myself to do well on my duke of edingburgh that I was doing at school and I cant remember what she said to my brother and sister. We then got told to expect our mam home for christmas, she had been away since July, this was good news.
My dad came home and said that he had been told our mam wont last the night, this was October. I cant remember the exact words but it is more caring than blunt how our dad told us. Im not sure how I slept but my dad came into my room roughly at 8am and told me my mam passed away at 00.03 that morning. I didnt know what to feel. My friend knocked on my door at 8.30 for school as that is how unexpected it was for my mam to pass. I tell her the news and I hug her. We have been friends for a long long time. That is my first main tragedy of life!
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