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.