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.