Been so long since i updated as so much has happened. Charlie has been in and out of hospital a lot lately with various infections. Most recently was last week, he had a nasty cough and didn't really seem himself so I took him to the ward and they said he had reduced air entry into the bottom of the right lung. At first we thought it was pneumonia but his chest x ray didn't really show much so they then decided it was a plug of infected muccas that was causing the problem. So he was admitted and had four days of I.V antibiotics and intensive physiotherapy to try and move the blockage. When he got discharged he had more air entry but i still didn't and don't feel happy about him. He still has a nasty cough and is complaining of his ear hurting so we are off to the GP today and see what he thinks. I also spoke to the Brompton yesterday and it was decided that they are going to bring his appointment forward by a month so they can see whats going on. Normally when he gets discharged he is a lot better and I'm happy with him but this time I'm not at all happy with him. Whilst he was in there he missed a trip to go and see Mickey Mouse's magic show so he was very disappointed as he loves Mickey and was really looking forward to going. I had booked the tickets a couple of weeks before and felt so bad for him when he was unable to go.

He had a review with his immunologist last month and it has been decided that they will increase his plasma infusions to two weekly and also increase the dose because it seems as though the infections he is getting are always the week his infusion is due then it has to be put off because he's ill and then it's a vicious circle. Fingers crossed that will help. I was very keen on Charlie having a port fitted so that all of his medication etc could be done through that but whilst they agree he does need one the risk of infection in Charlie is to high because his body puts up no fight against infections we have to be very careful so they are not going to consider it until his vein access becomes almost impossible.

Olliver has been ok he's not been too happy lately as he is having to be shipped off to family and friends a lot when ever Charlie gets taken into hospital so he has been very unsettled. He has been staying with my mum in Brighton over the easter holidays so hopefully he has had a chance to relax as all the upheaval really does affect him.

I think that's about it for now I'm going to get ready for taking Charlie to the doctors now, I will update soon to let you know what going on.

Tonsills and Infections!

Charlie had his tonsills adenoids out and grommets put in on the 5th of Feb and all seemed really well. He had a high dose of oral antibiotics for 4 days before the operation then had it done on the Thursday morning. It went really well and a couple of hours later he was eating toast and drinking we were thrilled that everything had gone so well and he was discharged the following day with more oral antibiotics for 7 days to try and avoid any problems. He was doing really well until Wednesday when his temperature went up a bit and his breath had a horrible smell. I phoned the ward who told me to bring him in to be assessed. Charlie has what they call a green card which means he gets seen straight away without having to wait etc due to how quickly his health can deteriorate. He is treated on the same protocol as the oncology kids as if he were neautropenic so is seen as a matter of urgency. Anyway we got there and he was examines straight away and I was told that he had an infection in his throat were his tonsills had been removed, he also had a large ulcer covering the back of his throat as well. He was immediately put on I.V antibiotics gentamycin and piptobactam which luckily seemed to do the trick and we came home on Friday. I am seriously going to discuss him having a port inserted in more detail with his consultant at the next visit as his needle phobia is severe and even if he only has I.V antibiotics 5 times a year it's going to make it much less stressful for him and will make things much easier while he has i.v plasma infusions. He's still not 100% well but does seem a lot better. He was sick yesterday and didn't seem too well I had visions of him ending up back in hospital but he perked up. He's not keen on eating as it is still sore i think and if you ask him how he's feeling he says not better!! Bless him, he has got more colour in him though so fingers crossed. Olliver is fine and has just got back from his weekend away with cubs and had a great time I've just finished washing his smelly muddy clothes and trainers!! He's in bed now after a nice soak in the bath and is exhausted so a good nights sleep is on the cards i think! Tomorrow I'm going to take him into town for some lunch whilst a friend looks after Charlie just so that we can spend some time together as charlie has obviously taken up a lot of my time lately. That's about it for now hopefully things will run smoothly for a while and Charlie will get better. He has his infusion on Tuesday but I'm not sure if he will be able to have it I will have to ring them on Monday. That's it for now i will update when I have some more news.

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.