childhood cancer

childhood cancer

Monday, October 10, 2011

Tired aprehension

Quick one tonight - very tired after a largely sleepless night last night. Luke seemed perfectly alright, he just didn't want to go to sleep after he woke when we did his night time drugs and top-up feed.  At one point at around 1 in the morning I had to walk out of his room, having nearly got to him sleep, in fits of laughter as he lay in his cot, smiling up and waving at me singing row row row your boat...

On top of that, at some later point in the night he pulled his NG tube out (again), so Letitia had another trip to our local hospital to have a new one put in.  Maybe someday he will get bored of that trick (or maybe not).

I'm pretty aprehensive about tomorrow. We're back up at Addenbrooke's for the day (hopefully no longer than that).  Luke has a dose of one of his chemotherapy drugs to have, plus a check up (including blood tests).  This will all entail at least one cannula, as he doesn't have his new hickman line yet - the operation for that is meant to be next Monday.  Luke, like any baby, is distinctly unimpressed when someone tries to stick a needle into him (but he still manages it far better than his Dad).  I don't think anything particularly bad can happen tomorrow - I think the worst would be his blood test shows low platelets, red or white blood cells and he needs a transfusion.  That will keep us there for an extra few hours but shouldn't be any big deal (reminder to self - Luke is back in hospital next week, I must give blood while he is there).  But, even though I can't really think what bad can happen that we aren't broadly prepared for, I just am not looking particularly forward to it. 

Having said that, I do have the next two days with Luke and Letitia - at the hospital with them for as long as it takes tomorrow, and then working from home on Wednesday.  I will need to shut myself away in the spare room and get on with work tomorrow night and on Wednesday, but at least I can pop down for a coffee now and then, and will save an hour each way driving - all extra time I can spend with my boy.  I am seriously lucky to have a job which can be fairly flexible, and very understanding people around me at work.  On which subject, I need to speak to the bank about potentially having a payment holiday on the mortgage next year.  Letitia has (I think quite rightly) decided not to go back to work quite as planned.  I am at least a couple of promotions away from being able to be the sole provider in my household - and right now there is no thought of promotion, just holding onto the job I currently have!  So, savings have to be made somewhere while Luke is ill, and the mortage is far and away our biggest expense. 

Hopefully tonight will be more settled - we could both do with some solid sleep.  For the first night in what feels like ages I am not about to settle down to a few hours' work once Luke and Letitia are in bed, so we should all be nice and refreshed in the morning.  Touch wood.  One problem which we have picked up on specifically tonight, but have noticed on other nights, is Luke often wakes up, or at least seriously stirs, towards the end of his top up feed.  With the drugs, the sterile water to flush the NG tube, and the feed, there is about 115ml of fluid going into a pretty small tummy.  We have wondered if trying to give him 100ml of feed at a time is just too much for him to be comfortable with, and whether either giving an additional feed during the day of 50ml, and just doing 50 at night will work better.  Either that or making his day time top ups slightly bigger and doing slightly less at night.  Who knows, but we'll give it a shot. 

1 comment:

  1. It must be so hard to think about work and money when your baby is so ill. I think you and your wife are doing incredibly well. Hope Luke has a better night.