Dylan didn't go to sleep until nearly 10pm due to the noise and drug withdrawals keeping him awake, he slept fairly well despite noisy new admissions and loud conversations and phone calls from the nurses station but poor mummy did not!
This was until around 2am when they disturbed him to do his blood pressure and by using a torch to check his breathing.. then his withdrawals starting kicking in (he was due Clonidine at 3am). So I ended up sitting up with him until nearly 4am trying to settle him with constant disruptions!
Firstly they were concerned about his breathing and sats until I pointed out it was because he was withdrawing and chewing his dummy in distress and he had Sildenafil at 2am.. I had to explain (again) to the new nurse that had taken over during break time that his heart rate would be continually high and his sats would be much lower rather than trying to creep back up slowly if there was an issue, not to mention his respiratory rate would be much higher than 24. None of this information had been handed over which was a little frustrating having to explain it all myself in the early hours of the morning.
Then she woke him up leaning on the bed trying to reach his fluid drip pump which with his bed being an air mattress made the whole thing move. Then she left the fluid pump beeping away.. Then it occurred to them that his fluids had ran out and they hadn't got anymore for him so I could hear the phone conversation regarding ordering him more which by this point he didn't actually need so I pointed this out and it just seemed like I may as well have been talking to myself as nobody was listening! Not to mention them still discussing upping his ng feeds which PICU handed over not to and again I doubted he would need it increasing in the morning, but I was so exhausted and sick of disruptions I just let them get on with it fully prepared to discuss it all on ward rounds..
On morning ward rounds they did decide to move us into a side room for Dylan's safety.. until he started having a coughing fit after lunch and needed extra oxygen support and a nebuliser so realistically it was deemed safer to keep him in view of the nurses station and nearer any extra equipment for the time being. He started a similar coughing episode this evening also. This could be caused by any number of things so the main thing is to keep an eye on him this next few days.
Other than that he has been doing really really well and now eating and drinking! We are still only at the one chest drain and he has been talking lots today and giggling and generally back to being our Dylan just a little weaker. I have no idea how the next two weeks will pan out with his drug weaning and physiotherapy but he surprises us all every day so he may surprise us even more yet!
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