Must get better at this!!

It's been a really really long time since I last blogged but so much has happened I thought I'd blog and get it all off my chest!!
Well the end of 2009 was quite pants with Charlie being in and out of hospital and Olliver having a while host of problems. Charlie got home from hospital Christmas week after going into have his port a cath fitted and having to stay in for a week after the doctors discovering he had a nasty ear infection and some chest noise. He had the two usual I.V antibiotics and they seemed to do the trick. So we were allowed home to prepare for xmas which we did and thankfully it was a good one with no hospital admissions or anything unforeseen!!!
Olliver has had a lot of health problems of late and has recently been diagnosed with hyper mobility syndrome for which he has physio weekly and exercises to do at home daily. Auditory processing disorder which I'm still trying to fully understand and have become increasingly frustrated at his schools lack of help for him regarding this and also a possible immunodeficiency for which tests are still ongoing. Although obviously all this has come as a blow the fact that he possibly has a diagnosis in the immunodeficiency for all his ongoing problems has come as a strange kind of relief, because hopefully now he can have the correct treatment for this, which will in turn help a lot of his recurrent problems.
So that was how 2009 ended. This year has so far been a busy one as normal but not all due to the constant rounds of hospitals visits etc. I have started volunteering in a pre school with a view to working there part time come September. I have been really enjoying it and so far it seems to be going well. Strangely enough it was me who suggested doing the job voluntary as I was very unsure if I would be able to manage it with everything else I have to do regards the boys. I went for the interview as normal and explained my situation then a few days later they called to offer me the job and I've been doing it since. I really enjoy it and it takes me away from the endless round of illness hospitals treatment etc and gives me something for myself so I really hope I'm able to continue. I have two days a week free and have so far been managing to fit all appointments into those so fingers crossed.
Charlie this year so far has not been to bad he is still on his host of daily medications including twice daily chest physiotherapy and three weekly plasma infusions. He even managed to beat an ear infection a couple of weeks ago with just some strong oral antibiotics no i.v's required so we were over the moon about that. Now we're concentrating on getting him prepared for reception class in September and fighting to ensure funding is secured before he starts to enable him to have the support he needs. I will fight tooth and nail for this if necessary as I feel if Charlie starts school without the appropriate support this will do more harm than good and could set him back further. We want the transition to be as smooth as possible as he has enough disruption in his life dealing with his illness etc and pre school has been one of the main stables in it so it will be hard for him whatever we do. H e is aware he will be starting a new school and is worried partly because he wont be at the same school as his brother and partly due to the fact he's so worried about coming out of nappies and having to use the toilet at school. Charlie is still in nappies in part due to the volume of medication he is on and his illness in general but also because of his slight developmental delay. I hope he will be in pants soon during the day and we're working really hard on this. Anyway that's all I've got time for at the moment but I'm going to try and update this regularly because regardless of whether or not any one reads it I find it very therapeutic!! I will update the rest of our news soon

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.

Change of plan

Well things have all changed again for Charlie he had a confirmed diagnosis yesterday of combined immune disorder this is a primary immune deficiency it means he has low levels of antibodies and he doesn't respond to vaccines as healthy children would so he is still at risk of childhood diseases eg measles etc even though he has been vaccinated against them. It also means he is very at risk of infection as we are already aware from all the infections he has been getting and also infections from cuts etc if he falls over. He also has stomach problems which they have told us are related to the immune disorder. He has just got over pneumonia and a double ear infection and now his cough is back and he is growing the bug moraxella cattahralis so is on an increased dose of oral antibiotics and has also had a stronger antibiotic added in to try and give him a boost. He will be starting immunoglobulin replacement therapy next week at st Marys hospital this is the plasma which is taken from blood and is then refined and treated so as it doesn't contain any viruses etc. It is an extremely expensive treatment to be given and needs 1500 people to give blood to obtain one treatment dose of infusion. So we are all hoping this really helps and the immunologist and infectious diseases doctors at st Marys really think it is going to help him so please keep everything crossed. His blood tests he had done have shown deficiencies throughout the whole immune system rather than just one part of it. He also needs another c.t scan as from the last x ray his lungs look rather bad like that of a t.b sufferer i was told yesterday but this is hopefully not a true picture of them so we have to wait until after he has started treatment and is much better then the c.t scan will be repeated to try and see the true damage that has been caused to them. As I say he will begin the infusions next week and then will have a protocol and all the other bits and pieces he needs to try and give him the best care possible.

We got taken up to the ward where he will be and were going to meet the specialist immunology nurse she was at a bone marrow transplant meeting so unfortunately we were unable to. They are going to fit him in on a quiet day next week so we will be able to meet all the team and go through everything, ask any questions we want answered and just get to know how it all works etc. The doctors i saw yesterday were all very nice and did their best to explain to me what was the matter with charlie and why it was caused etc they drew diagrams and everything and they gave me a very quick science lesson on the immune system and also said that there is so much of it that they don't yet understand. There were three consultants all telling me things in a very short time so it was a little overwhelming. Anyway after we had finished there and had been given a tour of the ward and got his medication from the paediatric pharmacy it was time to get the train home and go straight to our local hospital for an ENT appointment where they were deciding whether or not to take his tonsills and adenoids out and put grommets in so he has gone on the list for that and it should be done by the end of January so hopefully that should make a difference as well. That's really about all the news i have at the moment everyone else is fine just worrying over Charlie I will blog again after Charlie has had his first infusion and we know how he's reacted to it.

Getting better

It seems like ages since i updated. Charlies blood results came back and they showed that his immune system was still low so it was decided that he would be referred to G.O.S.H to start his immunogloblin i.v infusions as they have a better home care team than ST Marys which would mean that eventually I could learn how to do the infusions at home. So I was glad that something looked to be getting sorted and we decided to go down to Brighton to visit my mum. Charlie wasn't to great but nothing out of the ordinary. In the evening we went out for a meal with my mum and my sister looked after the boys, half way through i got a call from her saying he wasn't to good and that he had a temperature so i told her we'd come back but she said to finish the meal and that she would give him calpol and inhalers and see how he went, i did feel a bit uneasy but decided to stay anyway. Then 10 minutes after i had finished speaking to her she phoned back saying that his breathing was not good so i quickly got a taxi back and phoned the emergency doctors who said they wanted to see him and not to wait in the reception but to go straight in. We went in and she done his oxygen levels which were 94% so not to bad but he usually has around 96 to 98% even with all his problems. They decides to admit him to the children's hospital and after a thorough examination and speaking with a doctor from the royal brompton who knew charlie they thought it best to keep him in and start i.v antibiotics gentamycin and ceftazadine . As we were only staying at my mums for the night i only had one spare change of clothes so i was in a panic but my mum said not to worry and she would go out in the morning and get us some bits and bobs. The next morning we saw the doctor again who said they wanted to give him a good few days of oral antibiotics as he had only just finished a course of cipro which we thought had done the trick but obviously it had only dampened down what was there and once that had been stopped even with his prophylactic antibiotics it had come back. So we were in there for the whole of half term we came out on the Thursday and came home on the Friday which was Halloween. Charlie had a rough time in there and I think that was one of the worst infections that he's had. At one point his o2 dropped to 86% so he was on oxygen and had to have 7 nebulisers one after the other then they managed to reduce it to one every hour then so on till he was going four hourly and could tolerate his inhalers without his oxygen dropping, he also became dehydrated and had to have i.v fluids for a couple of days until he felt like drinking again. Whilst he was in i called his doctor from st Marys and told him what was going on etc and he told me that he was going to chase up G.O.S.H and get them to start the immunogloblin i.v's asap due to his infections lasting longer and becoming more severe. I then got a call on the fri day i got home saying he had an appointment with the immunologist on the 21st of November but that he would have his first infusion before that and it was just a case of waiting for a day bed. I was really pleased to hear all that as the doc at st Marys seems to think that after a couple of infusions he will be a different boy as the infections will be much less. They then phoned on Monday to tell me they had a bed for Thursday and to be there for 10 am so they could start the infusion as it took a while and that they also wanted to do some bloods before he saw the immuno on the 21st that was fine we arrived on the the Thursday and got shown to our room etc then the doctor came to see us and told us he wouldn't be having the infusion today and that was not the plan the plan was for him to be examined and then have bloods done. I wasn't to happy as we had gone all the way into London just to have bloods taken and charlie really wasn't up to being trailed all the way there on trains etc with people coughing and spluttering for a 10 minute appointment to have blood taken. She then examined him and said he had a double ear infection and one of his drums had perforated and some of it was missing due to the repeated infections so the sooner we get the grommets in the better for him i think. So all in all the whole day was a complete cock up!! He has his appointment with the immuno on friday so i really hope they have a plan for him and at least trial the immunoglblin therapy as we thought was the original plan!! Anyway i think that is about it i will update when i know for sure whats happening with charlie. Olliver and i are fine and the boys have a lovely treat they have got tickets from postpals to see Santa at Harrods so that will be a lovely day for them and other than that we will just be getting ready for christmas i always put my decs up on the 1st of December so there looking forward to that too. Olliver wants an x box 360 and charlie wants the big dinosaur that's advertised on tele you sit on it and it walks and everything so I've got that but didn't quite realise how big it and think by the time both boys have their toys on christmas day there isn't going to be any room left for us!! Any way that's it for now as I'm really tired and I'll update when i know more about whats happening with charlie.