Night times are the hardest times

Nights are definitely harder than days when you are in hospital. In ICU there is no night and no day either.  Mae found ICU incredibly difficult to bear, both physically and emotionally. As soon as she was fully conscious, she was wanting to get out of there, and the nights were the hardest time. She was there from Friday afternoon to very early Monday morning, when she was transferred to the high dependency unit. When we saw her later that morning, the cardiac monitors were off and her pain was being managed by the specialist pain team. She was somewhat more settled, but it had been a grim night and she could barely speak about it. She got some comfort from talking with her Dad, who shared his similar difficult experience of ICU after his cardiac surgery a year or so back.

She was not to spend long in the HDU, as a bed in the ward came up the same day and so she was transferred again. None of these transfers were easy for someone so recently undergoing a massive surgery. At one point all her tubes, drains and bags were loaded onto the bed, she was moved to a corner, lay awkwardly and in pain unable to move or help herself, ignored for 40 minutes. The world of nursing moves in mysterious ways, not necessarily with the patient's comfort or emotional wellbeing as a  priority.

Mae had been hoping for a private room like she had at Royal Women's Hospital, but was placed in a four bed ward, despite there being two empty private rooms across the corridor. Apparently, having private health insurance makes no difference in a public hospital. She was relieved to be on the ward rather than ICU, but the price to be paid was that now she was in a spectacularly uncomfortable mechanical bed, unable to move. She tried to make the best of it and yesterday, successfully had her first walk, up and then down the long ward corridor, accompanied by all her tubes and bags in a bucket and trailing her drip stand. An achievement as momentous as her first steps at 13 months age. Lian and Matt arrived on a flying visit from Melbourne, bringing a gift of 5 small home made stuffed toys made out of fabric photos of Mae and Nick's actual pets.  This went over really well. Later, Derek came and cheered her up somewhat.

But the night was ghastly for her, again. This morning, Tuesday, Nick arrived at the start of visiting hours to find her once again distressed and traumatised. She feels unsafe without family there, gets anxious, angry, tearful, has awful night terrors and feels as if she is going crazy. It turns out this may be related to the morphine and is a recognized phenomenon. In the daytime, with family there, reality returns and she can cope again. What to do? We spoke with the social worker, the nurses, the peritonectomy team, the pain team and consulted Dr Google. Some help was given in the form of a motorised and more comfortable bed, and undertakings to change the pain management strategies, plus some counselling. But Nick decided the best solution would be for him to stay by her side all night. So hopefully, that is what is happening as I write this.  It would be easier, was his reasoning, for the staff to ignore him than to get at least two burly security guards to haul him away. He is determined.

On the bright side, Mae's physical recovery seems to be going well.  She is walking better and better, moving well, had an assisted shower today and is showing lots of strength and courage. The nurses are full of praise for her guts. (Mind you, Mae says she thinks her guts simply are not there any more, they have all been taken out.)

The physical recovery is on track but I worry for her mental recovery. Its a hard, hard road.  The histology about her tumours and the future management plan are still to come. Will it all be worth it? Will this give her life back?