Man on the moon
The boy had an ok night. But no more than that. Less good news is that his secretions are still flowing from his stoma. And we were told we would have to leave the nice cubicle to go back in the noisy bay. Then it all got a bit silly.
The boy slept most of the night but not resful sleep. Was awake when I took over at 7.30am. Having a neb. His chest sounds quite dry, not surprising in an air conditioned building.
The night shift said that we had to leave the cubicle to return to the bay. It was unwelcome news. It is quieter for him in a cubicle and he can have his own night nurses. These have a calming effect on him (and us). Apparently, there's another child with a trachy coming. A first for us. Allegedly, costs are the issue, as it is more cost efficient for them to have two trachies monitored together rather than keep little Ctel specialed in a cubicle at night. Originally, they were saying he would be here for two weeks. Now we will be lucky to be here a week. But this assumes our local hospital can get their act together. They have good intentions, are nice people but don't always deliver what they promise (notwithstanding that it was agreed at a meeting of nine people before the op).
The wife says we want the moon. It is true that whatever happens to the boy, we bank any progress and then try to get his other issues resolved. So, we have banked the operation and are focusing on how to help him overcome the side effects. It is part of dealing with each day as it happens and perhaps a bit of the sick kid equivalent of pushy parents making their children take Japanese classes (or whatever is fashionable this week).
He was still relucant to sit up for anything other than short periods. He still has saliva coming from nose and stoma. But his chest seems much better and he is off the oxygen (even when asleep). And then after I'd been griping that he wasn't trying to be active, I offered him the chance to be carried into the corridor. And he leapt at it. Then he pointed to the play room. Then he volunteered to sit in a chair. The wife went off to take a call. So, he decided he wanted to find her and holding both my hands took a few tottering steps. Says nothing about his balance but is a major achievement.
Then the silliness started. We heard that our local hospital can't take him before Christmas. Not enough staff. We go into the bay. Then they say he can't stay as they need the bed. He may have to go to another ward. But that ward may not have the nursing cover. We spend the next three hours getting conflicting messages in a grotesque pantomine. Yes, he will be staying. Oh no, he won't. Yes, he will. No, he won't. Finally, yes he will but there's no nurses. Eventually at nearly 10pm, yes there are. In the meantime we've been trying to keep him awake. And so we do decamp to the other ward. And there are nurses but only for tonight. And I eventuallly leave at 10.30pm. Who knows what will happen tomorrow, let alone tomorrow night.
To end on a more positive note. Not only has the boy's picture been used as a Christmas card by the radio statiion but one of the staff said they saw it as a poster at a bus stop. Bless.
The boy slept most of the night but not resful sleep. Was awake when I took over at 7.30am. Having a neb. His chest sounds quite dry, not surprising in an air conditioned building.
The night shift said that we had to leave the cubicle to return to the bay. It was unwelcome news. It is quieter for him in a cubicle and he can have his own night nurses. These have a calming effect on him (and us). Apparently, there's another child with a trachy coming. A first for us. Allegedly, costs are the issue, as it is more cost efficient for them to have two trachies monitored together rather than keep little Ctel specialed in a cubicle at night. Originally, they were saying he would be here for two weeks. Now we will be lucky to be here a week. But this assumes our local hospital can get their act together. They have good intentions, are nice people but don't always deliver what they promise (notwithstanding that it was agreed at a meeting of nine people before the op).
The wife says we want the moon. It is true that whatever happens to the boy, we bank any progress and then try to get his other issues resolved. So, we have banked the operation and are focusing on how to help him overcome the side effects. It is part of dealing with each day as it happens and perhaps a bit of the sick kid equivalent of pushy parents making their children take Japanese classes (or whatever is fashionable this week).
He was still relucant to sit up for anything other than short periods. He still has saliva coming from nose and stoma. But his chest seems much better and he is off the oxygen (even when asleep). And then after I'd been griping that he wasn't trying to be active, I offered him the chance to be carried into the corridor. And he leapt at it. Then he pointed to the play room. Then he volunteered to sit in a chair. The wife went off to take a call. So, he decided he wanted to find her and holding both my hands took a few tottering steps. Says nothing about his balance but is a major achievement.
Then the silliness started. We heard that our local hospital can't take him before Christmas. Not enough staff. We go into the bay. Then they say he can't stay as they need the bed. He may have to go to another ward. But that ward may not have the nursing cover. We spend the next three hours getting conflicting messages in a grotesque pantomine. Yes, he will be staying. Oh no, he won't. Yes, he will. No, he won't. Finally, yes he will but there's no nurses. Eventually at nearly 10pm, yes there are. In the meantime we've been trying to keep him awake. And so we do decamp to the other ward. And there are nurses but only for tonight. And I eventuallly leave at 10.30pm. Who knows what will happen tomorrow, let alone tomorrow night.
To end on a more positive note. Not only has the boy's picture been used as a Christmas card by the radio statiion but one of the staff said they saw it as a poster at a bus stop. Bless.
posted by Ctelblog at 3:23 PM
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