Today has been a good day with Luke. He has been generally a happy little chappy - the only time he got particularly upset was when Letitia and I decided to re-do the paster strip holding his NG tube in place, as it was looking decidedly like it was about to fall off. He didn't appreciate being held and restrained by Letitia while I faffed around with various sizes of sticky plaster and tape. But, it wasn't too bad, and the end result actually looks more secure that when any nurses have done it so far. I wonder if I missed my calling....
When we came home from hospital, it was with a big box of various sized syringes, feeding tubes, high calorie milk for top up feeds, and drugs. As big as the box was, there is in reality only just enough stuff to get through a week, and having called Addenbrooke's yesterday, we received a delivery today. We have about a month's worth of Infantrini (high calorie top-up feed), but only about three day's worth of single use feeding kits. We are back in Addenbrooke's on Tuesday for the day, so hopefully can get some more then, and then get the little issues in our supply line ironed out...
Today we have been out for a couple of walks, Luke has been happy, playful, eaten well, went to bed fairly easily, stayed asleep when we did his drugs and top up feed tonight - it has been a good day. Added to that, both of his nannies (Nana and Granny) came over to see him along with one Grandad. All round, he has been spoiled for attention. It was particularly good to see my Mum (Luke's Nana) as she has been unwell for a few weeks, and hasn't been able to see any of us since Luke last went into hospital. That meant over two weeks in the hospital and this last week or so at home - she has found it tough not seeing us, and we her. But, I think we all understand that we can't take the chance of Luke picking up any illnesses if we can avoid it.
A question keeps coming into my mind, mainly following conversations with my wife. It is becoming abundantly clear that we simply aren't capable of doing normal life at the moment, even when Letitia and Luke are at home. Luke needs more time and attention than before, the feeding and drugs regime take chunks of the day, we are both absolutely exhausted still (even if I get to bed at a sensible time, I don't sleep for hours), and with the flexibility I am having to ask for from work, I am still working a lot of evenings to stay afloat. Like Letitia said tonight, we can do the shopping (we get it delivered by Tesco so don't even need to go to the supermarket), check the mail occasionally, and just about stay onto of keeping the house tidy. Apart from that, nothing is really getting done - no real housework, struggling with washing ironing, gardening, even thinking about big things coming up. It is my step-dad's 60th in a couple of weeks, and my Nan's 80th not long after that. I am embarrassed to say that I haven't given either one of the a seconds thought, and even having tried to today for a while, I just can't focus.
I guess my question is whether this will get any easier, whether our expectations have to adjust, whether we will develop some amazing coping mechanism which will carry us through the next year, or whether certain things will just fall apart a bit.
All I know absolutely for sure, with definite crystal clarity, is that only two things matter in all of this - my son and my wife. As long as I am doing all I can to make sure Luke gets the best care he can, and Letitia has as much support as I can give her, then everything else takes second priority.
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