We need a win.
That was the thought I came out of the meeting with all the staff involved in our son’s care. They went around the table and talked about the issues: his eating – or lack thereof; his hydration – through an NG tube they’re in no hurry to remove; his weight bearing – which will determine his discharge date; his sleeping – the erratic nature of it and his medications – which they are loath to increase.
All of this was in the face an impassioned opening statement by Dad about how he thought we needed to reduce the interventions – especially the NG tube – to allow us to get our son back to himself.
I came out of the meeting unsure if we had an action plan, but concluding that trying to tackle all these issues at once was clearly not working.
The fact Deane is often uncomfortable and wanting to be turned dozens of times through the night means he is exhausted. Not settling for hours at night gives way to sleeping most of the day.
Waking him from naps to eat the minced food the speech-language pathologist has deemed the only thing he is safe to eat is an exercise in frustration. He is too tired to eat and completely uninterested in the gruel they are offering him.
Because he is not eating he has limited energy for his physio or anything that involves getting out of bed.
By not getting out of bed, he is not practicing drinking through a straw which will give him enough liquid to remove the NG tube which would make eating more comfortable.
All of the issues are interdependent. It is very hard to pull out a single strand without the rest of them knotting tighter.
But that’s what we are trying to do. Both for Deane’s health and our sanity, we need to crack one of these issues to be able to tackle the rest.
The one we’ve had intermittent success on is sleep. There have been some good nights. Not yet successive nights, but enough that it is giving us hope. We have started keeping detailed records on when he gets his medicine, when the feed starts and how well the night goes. We’re looking for a pattern.
For people who are not particularly schedule focused this is hard. Meals in our house do not happen like clock-work , our kids’ bedtimes have always been an approximation, we like spontaneity. But there is nothing normal about this situation. We need to change our habits. And we will change – at least until we get our son back.