Unfortunately in my last post I spoke too soon bragging how we could push polygam for another week. I no sooner postponed with J's paed on the Friday and on Tuesday he started coughing. There has been lots of sick kids at school and lots of bugs going around so we have been lucky to avoid illnesses this far. Anyway the cough just got worse and with Jason we have to react quickly otherwise he can get pneumonia overnight. Also with the temperatures came the gagging and vomiting. We had to wait for an isolation room which we managed to get on Friday (luckily no one wants to be in hospital for a long weekend). Also luckily pharmacy had already ordered Jason's octygam which they had in the fridge. How very thorough of them!!
The good thing was we were able to get Jason examined and checked out. Normally I have a stethoscope at home and know how bad his chest is but mine had broken and I hadn't replaced it yet. Well it turns out his lungs were bad wheezy and crackly. Also his bloods showed that his CRP levels were high and that morning he had started with temperatures. So just as well we managed to start antibiotics, nebbing, nasal sprays and cough mixture. His temperatures are up and down but his chest is getting better. So I guess this again proves that we cannot push polygam/octygam more than 3 weeks.
One thing I hadn't mentioned in the past was I did a trial run of no night feeds taking away his 500ml formula over night. The main reason was I so needed to catch up on some sleep to feel human again but also I wanted to see what difference it would make for Jason and his eating. Well I managed to catch up on some much needed sleep for 8 nights but it made NO difference in Jason's eating. His days were just the same as days when he was on night feeds. He was no hungrier than when he was on night feeds and he just lost weight. I still say Jason doesn't have an apetite. He can go all day or days without eating and it wouldn't bother him. Anyway with school breaking up and Jason going to another school during holidays I have started his night milk again. In the new school he won't be fed so he would lose out on another meal. The good news is his weight is back up again. It was a good trial and I will definitely keep trying to get rid of night feeds. It's just to try and get enough calories in the day and to stop the diarrhoea and then he will retain his weight!! Quite tricky but I am sure we will get it right eventually. With his tummy being the way it is with the diarrhoea, any attempt to increase calories doesn't work. I cannot add butters, oils, cream or high calorie powders. They just go straight through him. And if I had a tummy like he has I also wouldn't feel like eating either!!
We have missed out on therapies and swimming last week and today but hopefully we will be back to therapy on Friday.