Sleeping it off.

JimJam had yet another trip to theatre today to have her Hickman line out. It got a nasty bug and as our consultant has been threatening to take it out for a while, it had to come out. The bug was a particularly nasty one, even though she's been fine, and the microbiologists demand them to come out. Her blood cultures came back negative, so today was the day. She hasn't got another one just yet as bugs can be stripped off back into the blood when the line comes out so she's got a pic line in one foot and a cannula in another. She's going to be cross with me when she wakes up!!! They did try to put them in her arms, but judging by the amount of pin pricks she has, they must have got fed up.

We have slowly started feeding again, but will most likely come back home on TPN. Not ideal as it can be an infection risk but if it gives her the calories she needs then so be it. But we won't let her tummy issues be swept under the carpet. We also have to be trained to do it.

Our amazing consultant is back on tomorrow so will have a good chat about things going on, and Alex gets to see him too. Always good to have facts coming direct from him rather than interpreted though me! I do feel like I play Chinese whispers sometimes and always worried I have the wrong end of the stick, or just don't grasp it. Even though we have been living this for 3 1/2 years, it still seems like double Dutch sometimes.

This week saw the discharge of the gorgeous little Max. He's handed over the current longest patient baton to jimjam. One we are quite keen to pass on to someone else...