11/11/07

This week has been a bit stressful as Elis' oxygen requirement has continued to be problematic. To compound the issue, he had his 16 week immunisations on Wednesday and reacted a bit badly to them for a couple of days. During the week his oxygen requirements have crept up and by yesterday he hit a whopping 5.5 litres. He doesn't seem to by symptomatic of infection and he's not been too bad with taking his bottle feeds. He was given another extra dose of diuretic last night as the thinking is that perhaps the fluid is building up again and making it difficult for Elis to breathe and putting more strain on his heart. It seemed to help but he's still been on three litres of oxygen today and his sats haven't been particularly good. I'm looking forward to hearing what the consultant has to say tomorrow morning as I have gone back through my notes and I think that the period when his oxygen requirements were at their lowest coincides with when he was on a course of this additional diuretic.

The good news is that when his steroid level was checked during the week, whilst we were expecting it to still be low, it was actually high. The dose was halved on Friday and his final dose was given this morning. Once he has had a week without any hydrocortizone medication, he will be tested to see if his body can produce a burst of steroids if it is put under stress. After this test, the doctors will be in a better position to know whether he could cope with undergoing surgery at this stage. At least this is something that has gone in the right direction this week. It's a bit of an unexpected kick in the stomach that we now seem to have increased respiratory issues to resolve. Poor Elis, it really is one thing after another.

Oh, it also seems that his Xray last weekend shows that he now has cysts on his left lung. Again, I'm not entirely comfortable that I know the implications of this, but I've been told that its not an uncommon development with Chronic Lung Disease and it might improve or it might not. It will make Elis more vulnerable to chest infections and further infections could result in further cysts... Just another topic for me to discuss with the consultant tomorrow.