A good night's sleep then back to normal (I hope)

YAY, we got home today Wills is much better but we will still be doing the IV antibiotics for the next 12 days. I get really nervous doing his TPN after such a nasty line infection. The rate he goes downhill is so so scary and it takes a while to get the scene out of your head. Of course, being mindful of infection risk is important but you really need to stike a balance. Wills tends to get infections from inside his intestines that translocate into his lymphatic system and then settle into his line. It is good to know that our IV technique is not introducing bugs but worrying at the same time as we can do nothing to control William's gut bugs. His intestines don't move properly so bugs settle and breed. His recurrent infections are causing cause for concern, not least because he is developing a nasty habbit of getting septic shock every time!

His heart murmur is, thankfully, nothing to worry about. It was just because he was so ill. However, the irregular rythmn he seems to get from time to time is a bit more concerning. It may be that his neurological condition is affecting his heart. I was really upset to hear this. However, it sees that any impact his condition is, or may have, on his heart, is much more easily fixed than the intestinal failure he already has. He is going to have a 24 hour ECG over the next 2 weeks. If this reveals that his heart rate becomes too irratic, he will be assessed for a pacemaker. Strange isn't it. You can fix neurological failure of the heart to behave normally but there is little that can be done if the intestines fail.

Oh well, a good nights sleep and all will begin to settle back to normal tomorrow.