Normal, whatever that is

Just a quick one this morning.  I started this last night, but was too tired to finish it!

Having Luke and Letitia home is fantastic, but is bringing it's own challenges.  We had some trouble with Luke's NG tube last night, in that we couldn't draw anything out of his stomach in order to test that it was in the right place.  We've seen that a couple of time when in the hospital, and the nurses obviously have a couple of tricks which they try, but have very occasionally stopped for a while and suggested Letitia tries to give him a breastfeed to make sure there is something in his stomach.  We nervously tried to test the tube about half a dozen times, but couldn't.  We then decided we would have to try and get him to breastfeed, the process of which meant he woke up.  He didn't want to feed, so we decided to give his drugs orally, forget the top up feed and try to get him back to sleep.  After a while he decided he did want a breastfeed after all, and settled down for a good six hours, so all is well.  But the pressure of potentially deciding to do the wrong things (or rather, not knowing what the best thing to do is, and doing something which might not harm Luke, but might not be the best decision) is weighing pretty heavily right now.

I guess they wouldn't have sent Luke home with the number of things we have to do if there was any chance that real harm could be done, and we are no longer shy about calling our local hospital to speak to someone for help, but Luke is going through enough without us adding to the problems by doing something wrong.

On top of that, it is quite tough being home for less tangible reasons.  On the children's cancer ward, as sad as it is to see some of the kids, you are one among others going through the same thing, fighting similar battles and dealing with similar anxieties (although none where we are have the same problem as Luke, they are all in a similar boat).  At home, where we just want to relax and enjoy our time together, normal life still hasn't returned as we feel that we can't take Luke too many places, or join in with baby classes and other normal things that Letitia and Luke were doing a couple of months ago.  It would be awful for him to pick up another infection at this stage, and we don't feel we can take the risk - maybe we are being overly cautious, but it's hard to know what to do for the best.

I suppose it is just the realisation that normal for us going forward is very different to what normal was before.  I think we both knew that, and I may have even written something along those lines, but now they are home, we are actually feeling it for the first time.  Obviously if the treatment works well and Luke wins this battle, then any and every sacrifice is worth it, but its tough.  That's all.