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.

Another day another appointment

Well today we were at St Marys in Paddington to have Charlie's bloods done I also had to have mine done as a control factor apparently. Charlie was really good and he didn't even notice that they were taking his blood as he was to busy blowing bubbles with the play specialist so that was good. They even sprayed my hand with the cold spray so that I didn't feel it either!! We should hopefully have all the results back in 10 days time then his consultant is going to call me with a plan as to when he is to start the plasma infusions at Great Ormand Street hospital and what dose etc that he has to have. We are really really keeping our fingers crossed that what his consultant said about after Charlie has been on these infusions for a couple of months that he should be a different boy and the infections he gets should be much further apart and much less severe. As Charlie's lungs are starting to show damage from all the infections he is getting he has streaking and thickening of the bronchial wall which we never knew until last Thursday when they did another chest x-ray because his consultant was concerned with the sound of his chest. We have also found out a little more about the plasma infusions we have been told today that the infusions will take roughly about 4 hour depending on how much plasma has to go through and how he reacts to it etc etc. They put it in just through a drip as they would a blood transfusion or fluids so that isn't to great as I was under the impression it was just going to be a quick thing like maybe an injection or something every so often and that would be it, so I really had my eyes opened today and realised it was very different to how I thought it was going to be. But as long as it's going to help Charlie then it's fine by me as we really are running out of options in keeping him well as nothing seems to be working. Like the chest infection he has at present he was put on Cipro again last Thursday and started taking it Friday as we couldn't get it before then but he only has another 3 days left of it and he really doesn't seem that much better I'm really hoping that he picks up in the next few days as this does seem to of hit him very hard he's not sleeping well eating well or anything, he has also lost a bit of weight not loads but enough so that you can notice it. Ollivers been fine getting on well at school etc even with all the chaos going on around him!! Well that's about it for now I will blog again when I know more about whats happening with Great Ormand Street etc.

Poorly boy

Well where do i start, things seem to have been quite hectic lately. As I said in my previous post charlie had been unwell he finished all his extra antibiotics and did seem a lot better cough cleared up temp was down and so he went back to pre school. Then Monday I took him he was fine when I dropped him off but when I went back to collect him he had a very runny nose and watery eyes. Great but I did only think it was a normal cold so we increased his prophylactic augmentin to treatment dose but as the week has gone on he got a bit worse then by Wednesday he was very breathless with a very chesty cough dark eyes and very irritable. So Thursday he was seen at ST Marys hospital in Paddington first he had the usual done he was weighed and measured then we got taken through into another area and waited for the doctor to see us. Charlie is not very good at being at hospital or waiting to see anyone so he wasn't the best behaved and was actually very hard work. When it was time to see the doctor we went in and he gave Charlie some pens and paper to draw with as he kept interrupting us and we kept forgetting what we were talking about!! The main reason for being there was because he is having problems with his immune system it is low and you only so much as have to look at him in the wrong way and he is growing a bug on a swab or has some kind of infection. Anyway we were told that his immune system is not normal and that the his lymph nodes in his neck and under his arms were raised, he then listened to his chest as he said he sounded chesty with a chesty cough. He couldn't hear anything but wanted him to do for an x ray as he said he was concerned about him. We got all the forms and took him down there while we were waiting for him to be called he again managed to create havoc! While my back was turned for a second he grabbed his brothers can of drink and tipped it up all over a chair, I was so embarrassed I apologised and offered to clear it up but they said not to worry! Anyway he had the x ray then we went back up to have blood tests and skin prick tests the skin prick tests showed no reaction to anything as was expected the only slight reaction he had was to a type of mould aspergillas. Then it was time to go back to the doctor he looked at the xray and said that Charlie has a right sided middle lobe lung infection with streaking he also said that there is a bit of scarring in his lungs from previous infections which we have never been told before. So he has another 10 days of Cipro and hopefully that will do the trick again. I am worried about him though as i think this is the worst he has been since he had pneumonia in April, he's very breathless and has a nasty cough again he says he hates going to bed because it makes him cough, I've propped him up more with pillows to see if that helps hopefully. His mew consultant at ST Marys says he is 99% sure he has an immune disorder and has sent off the bloods etc to check he is due to have a meeting about him at great ormand street hospital and has said he would like to start plasma infusions once a week there and then after a while they will show me how to do it at home when i feel ready as there was a lot to take in. He is pretty certain that after two months of these infusions he will be a different boy as his immune system picks up and he is more able to fight off infection. He also said that when he does get an infection he needs to be treated much more aggressively and for a longer period of time to what is normally done otherwise we are going to start having big problem's with damage to his lungs etc.

On a brighter note it was his birthday yesterday he went to school in the morning as he really wanted to give out his sweets that we had bought and i also had to collect some of the replies to his party that i still never had. After i had dropped him off i went to help in Ollivers school tuck shop then i came home and cleared up a bit then went to collect Charlie as i didn't really want to leave him to long. We got home and he played with some of his new toys his favorites are buzz woody and Jessie from the film toy story, some of my friends then came round to wish him a happy birthday. One of them had brought her niece with her so charlie was very happy to play with her while we all chatted and arranged our girls Christmas outing!! I think charlie had a good day despite not feeling great, he has got his party on Sunday at a local soft ball area sp i hope he is well enough, it would be horrible if he was unable to run around and enjoy himself. Olliver is doing well he has low iron levels at present so is on a supplement for the next three months then they will retest his blood and fingers crossed it will be back to normal. I think that's about all for now i really need to go and have a shower and clear up as we have flu jabs this morning although i am unsure if they will do charlies due to the fact he is unwell.

Time for an update

Charlie's behaviour at pre school seems to have improved a bit, so fingers crossed this will carry on. But health wise he doesn't seem too good. His nurse came out on Thursday to do another cough swab as he still seems poorly but is getting worse if anything. His cough is very wet and he just doesn't look very well, he's got dark circles under his eyes and is very pale. He is not drinking very much which is very unlike him so has been on a drink that has extra salt and things in it to try and keep him hydrated as he seems to dehydrate quite quickly. He also has a temperature that keeps coming and going so I'm a little worried that he's developing another chest infection, at the moment he is on augmentin duo at his treatment dose rather than the usual prophylactic dose and also his second line treatment which is Azithromycin but it just doesn't seem to be shifting so I'm going to see how he goes over the weekend if he doesn't touch wood get any worse I will take him up to the ward on Monday for them to have a look at him again and see what they want to do with him or if I do get more concerned for him I will obviously take him up sooner. He's been getting very tired as well and not really wanting to do much which is very unlike him.

On a happier note I have booked his birthday party for the 12th of October it's in a big soft ball area that he loves so hopefully he will be feeling much better for that. I have invited 10 of his friends from pre school or should I say I will have if I ever get round to sending the invitations out!! I keep forgetting them every time we go. We also were lucky enough to be sent some tickets for Thorpe park from postpals so I will be taking both boys there which will be a nice treat for them, they don't know about it yet I'm keeping it as a surprise. I'm also looking around for someone to make me a cake for Charlie, he wants a Gordon out of Thomas the tank engine cake but I cant get one any where plenty of Thomas ones about typically! Charlie wants everything under the sun for his birthday anything he sees on the tele he says he wants!! Think I'll have to select a few things otherwise I'm going to be robbing a bank to pay for it! He loves having his photo taken and trying to take other peoples so I was thinking of getting him a Fisher price digital camera it's suitable for his age and I think he'd love it, he also likes to try and play on his brothers games consoles so I thought about getting him a V tech Vsmile which he could play games suitable for his age and he would think he was playing like his big brother so that's what I've got in mind at the moment anyway.

Ollivers been getting on well to. He has settled back into school well although I don't think he thinks a lot of his new teacher! He says she shouts all the time even if it's just for a silly thing, he's normally pretty well behaved in school so I don't really see what she is shouting at him a lot for I think either he is exaggerating and probably chattering to much and not concentrating or shes a control freak!! The first being the most obvious choice! I noticed on Monday when we were on our way to collect Charlie from pre school as he does a full day on a Monday and finishes 15 minutes after Olliver that Ollie was getting a bit breathless. We weren't walking up a hill or anything like that and I've not noticed him like that for a long time, when I asked him if he was feeling puffy or anything he said yes a bit so am slightly concerned about that as all his symptoms have been well under control for a long time now. I am glad that he has a clinic appointment coming up at the end of the month so I will speak to his consultant about it then he has been having trouble with his nose as well it always seems blocked and he has been using a lot of the menthol products about to try and help him but I don't think that can be good for him on a long term basis. So as I say we will see what his consultant has to say about all of it. Anyway I think that's about all for now Ill update again soon when I have more news about Charlie.