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New addition to the family
13 years ago
Saturday 31 January 2009
Long time no blog
Happy new year to everyone and sorry for the big delay in blogging. Things have been really crazy here the last few months. Firstly Charlie went for his first plasma infusion at the beginning of December. We got there and the doctor came to see us and was going through all the relevant information with me and i was signing all the consent forms whilst the nurses were doing all his obs etc. I could see out the corner of my eye them exchanging looks with each other but then they called the consultant away to speak to her. She came back and told me that his temperature was 38.7 I was really shocked because for once he seemed well. I said it must have been because he had been running around and playing, hey agreed to take it again 15 mins later. They took it again and it had gone even higher and within a short space of time he became very unwell looking. We were put in isolation and Charlie had a cannula put in for I.V antibiotics, they also tested his urine and he was dehydrated as well and needed fluids which I was very surprised to hear as he had been eating and drinking normally. Then it was time for a chest x ray which showed showed shadowing at the left bottom lobe. He was started on Gentamycin and cefuroxine i.v antibiotics. He continued to look unwell for a couple of days then picked up nicely he had a few drops in his sats although not major and were sorted with some extra inhalers. So in the end we were there for around 5 nights then he was ready to come home on extra oral antibiotics and looked much much better. His infusion was arranged for the following week. He had it done the week after and it all went fine.
We then concentrated on getting ready for Xmas until Charlie came down with a stomach bug which caused sickness and a very upset tummy. He took a couple of days to get over that and was then ok. We had a nice christmas and the boys enjoyed all their presents. We were very touched at the amount of presents that were received from Postpals, Charlie opened a couple just before xmas as he was feeling very poorly and seemed to have lost a bit of that spirit that has got him through a lot. The difference it made to him was lovely it really does put a smile on his face whether it be a card letter or present it gives him something to look forward to. You really don't realise the how kind people are until you get involved with something like that. So thank you very much to all the elves and reindeer's for everything. Just after new year Olliver became unwell. He had a annoying tickly cough for a few weeks but I really didn't think much of it as everyone had, had a cough cold etc but on the 3rd of Jan he woke up and was upset as he felt quite poorly which is unlike him, he then started to wheeze so I took him down to A and E where they told us he had pneumonia. I felt so guilty that i hadn't bought him sooner and felt that because my attention had been so much on Charlie that I had kind of let Olliver drift to the side lines. Which of course is not true and after a good cry down the phone to my mum i realised this, I did still feel guilty though. I had to then take him back to the doctors twice more for different antibiotics as it wasn't clearing up. He then had an appointment with his consultant who said his lungs still had signs of infection and put him on yet more antibiotics and steroids. He also had blood tests done to check his full blood count and blood tests to check for the immune disorder that Charlie has. I am very pleased to say he has not got this disorder and I am so relieved about it. He ended up having three weeks off school and is only going back properly on Monday he did go back for a few days but then came down with a cold, as he had only just got over the pneumonia I was advised to keep him home to try and avoid him becoming worse or the cold going to his chest. The doctor told me this has been the worst winter for illness in 8 years.
Charlie was supposed to have his tonsills out and grommets fitted on the 12th of Jan but due to all that was going on with Olliver we put it off and he is now due to have it done on Thursday 5th feb. However he has just got over tonsillitis and a water infection requiring 10 days of strong antibiotics. Which meant his plasma infusion had to be put off and he only had it done on Tuesday. It all went really well apart from his vein gave out and the infusion leaked into the tissue which caused him to have a reaction which then meant the cannula had to be resited which was a bit of an ordeal but all was done in the end. When he got home from school on Thursday he started vomiting and this continued until 6.30 am on Friday, he had a temperature of just over 38 so I was worried another infection was on it's way but he seems to have recovered from it touch wood. I spoke with his consultant yesterday on the phone who is not sure whether to go ahead with the operation yet, she said to go for his pre op on Monday then ring her on Tuesday and depending on how he is we will decide what to do. He has to have 24 hrs of I.V antibiotics before had to try and prevent any king of infection and he obviously needs his own cubicle to avoid any infection being passed to or from him, so we'll see what happens with that. He has also had a C.T scan which although showed some small changes to his lungs it didn't show anything like what they expected so that is very good, especially as he hasn't had a normal looking chest xray since last April.
The only other thing that's happened is that he is going to be assessed for a statement of special educational needs. His behaviour has become very bad and at times he is unmanageable he is always on the go and is often a danger to himself he seems to have no fear at all. He is very aggressive at times towards myself and his brother and blows his fuse at the slightest thing. I am having no luck with getting him out of nappies which I know in the grand scheme of things is no big deal and to a point I think he does have a right to be angry at the world but this is over and above that. This is something that I have known for a while but his pre school leader confirmed it on Thursday morning when i spoke with her. She thing he will really benefit from having one 2 one care at school and that a statement is the best thing for him. He will also have his behaviour assessed and we will see what they say from that. He has missed a lot of time off from being ill appointments etc, so that all has an impact on him. Although he has met most of his milestones easily there are other issues that need addressing so he can have the best start possible. His consultant thinks that this is a very good idea and says that many children who need a statement etc don't get one so whilst we are being given the help to grab it with both hands.
Well I think that's about it for now. I am going to try and post some photos of xmas later but I'm not very good at that sort of stuff so there may be a few upside down ones!!! Happy new year to every one and sorry for the delay in blogging.
We then concentrated on getting ready for Xmas until Charlie came down with a stomach bug which caused sickness and a very upset tummy. He took a couple of days to get over that and was then ok. We had a nice christmas and the boys enjoyed all their presents. We were very touched at the amount of presents that were received from Postpals, Charlie opened a couple just before xmas as he was feeling very poorly and seemed to have lost a bit of that spirit that has got him through a lot. The difference it made to him was lovely it really does put a smile on his face whether it be a card letter or present it gives him something to look forward to. You really don't realise the how kind people are until you get involved with something like that. So thank you very much to all the elves and reindeer's for everything. Just after new year Olliver became unwell. He had a annoying tickly cough for a few weeks but I really didn't think much of it as everyone had, had a cough cold etc but on the 3rd of Jan he woke up and was upset as he felt quite poorly which is unlike him, he then started to wheeze so I took him down to A and E where they told us he had pneumonia. I felt so guilty that i hadn't bought him sooner and felt that because my attention had been so much on Charlie that I had kind of let Olliver drift to the side lines. Which of course is not true and after a good cry down the phone to my mum i realised this, I did still feel guilty though. I had to then take him back to the doctors twice more for different antibiotics as it wasn't clearing up. He then had an appointment with his consultant who said his lungs still had signs of infection and put him on yet more antibiotics and steroids. He also had blood tests done to check his full blood count and blood tests to check for the immune disorder that Charlie has. I am very pleased to say he has not got this disorder and I am so relieved about it. He ended up having three weeks off school and is only going back properly on Monday he did go back for a few days but then came down with a cold, as he had only just got over the pneumonia I was advised to keep him home to try and avoid him becoming worse or the cold going to his chest. The doctor told me this has been the worst winter for illness in 8 years.
Charlie was supposed to have his tonsills out and grommets fitted on the 12th of Jan but due to all that was going on with Olliver we put it off and he is now due to have it done on Thursday 5th feb. However he has just got over tonsillitis and a water infection requiring 10 days of strong antibiotics. Which meant his plasma infusion had to be put off and he only had it done on Tuesday. It all went really well apart from his vein gave out and the infusion leaked into the tissue which caused him to have a reaction which then meant the cannula had to be resited which was a bit of an ordeal but all was done in the end. When he got home from school on Thursday he started vomiting and this continued until 6.30 am on Friday, he had a temperature of just over 38 so I was worried another infection was on it's way but he seems to have recovered from it touch wood. I spoke with his consultant yesterday on the phone who is not sure whether to go ahead with the operation yet, she said to go for his pre op on Monday then ring her on Tuesday and depending on how he is we will decide what to do. He has to have 24 hrs of I.V antibiotics before had to try and prevent any king of infection and he obviously needs his own cubicle to avoid any infection being passed to or from him, so we'll see what happens with that. He has also had a C.T scan which although showed some small changes to his lungs it didn't show anything like what they expected so that is very good, especially as he hasn't had a normal looking chest xray since last April.
The only other thing that's happened is that he is going to be assessed for a statement of special educational needs. His behaviour has become very bad and at times he is unmanageable he is always on the go and is often a danger to himself he seems to have no fear at all. He is very aggressive at times towards myself and his brother and blows his fuse at the slightest thing. I am having no luck with getting him out of nappies which I know in the grand scheme of things is no big deal and to a point I think he does have a right to be angry at the world but this is over and above that. This is something that I have known for a while but his pre school leader confirmed it on Thursday morning when i spoke with her. She thing he will really benefit from having one 2 one care at school and that a statement is the best thing for him. He will also have his behaviour assessed and we will see what they say from that. He has missed a lot of time off from being ill appointments etc, so that all has an impact on him. Although he has met most of his milestones easily there are other issues that need addressing so he can have the best start possible. His consultant thinks that this is a very good idea and says that many children who need a statement etc don't get one so whilst we are being given the help to grab it with both hands.
Well I think that's about it for now. I am going to try and post some photos of xmas later but I'm not very good at that sort of stuff so there may be a few upside down ones!!! Happy new year to every one and sorry for the delay in blogging.
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