Why not smile?

Came home from work yesterday to find the boy watching TV with Mummy. He always has a cushion on his lap - like Mummy. He wanted me to sit and watch with him. He likes Mummy on one side and me on the other. Then he held both of our hands and gave us each a kiss.

Just one more

A queasy weekend. A sense of something about to be snatched away. A time of nursing not parenting.

First weekend home since the start of March. But an underlying queasiness that it might end at any moment and we will be back in hospital. He's still not had a night without oxygen since the start of March. And in trying to work out how we manage his secretions with drugs always in the back of my mind the worry. The worry that we are taking risks that might put us back in hospital if we let too much saliva get on his chest.

His chest is only just stable enough for us to be home. He is just able to manage in air during the day, though not at night. His cuff was up at hospital, though this seems to have been building huge resentment and anger that boiled over when it was deflated and he could vocalise at us and
everything else in a massive "it's not fair" rage that could not be assuaged.

As a result, we have been trying to work out if we can control secretions by trying a new drug. The hospital haven't much information about the right dose (only the maximum). We are therefore forced into trial and error within the maximum.

Had my day with the boy on Saturday. A firm approach by the night nurse had got him asleep at a better time than he had been slipping into in hospital. He had a bit of a lie in but woke up cheerfully. Deflated the trachy cuff and gave him some physio. Plenty of yellow custard comes up and his oxygen saturation eventually stabilises in air.

Go downstairs. Not sure what he will want to do and whether the old routines of play apply. Persuade him to help with the washing up but soon he wants TV. Have to try to familiarise myself with his new medicines and timetable. In hospital, I can afford to leave this mostly to the nurses and just administer what they bring. Now have to plan more rigorously, especially those medicines that need significant preparation effort or time. Makes it feel like providing care not being a father. Hope this will change and I lose the sense of so much of it being "duty".

Day saved by going to auntie. He goes in his trike wearing wraparound sunglasses, to protect his eyes. Am aware of the looks he gets from people in the street. But auntie's is a chance for him to make tea/coffee, see the pandas and, crucially, watch Cbeebies. We are lucky that she is so tolerant of us and him. Then take him to the shops before we risk pushing our luck too far. Hard work today. Not much fun.

In my place

The boy waiting to go home from hospital.

First full day home was not a success.

Boy had a good lie in without the noise of the shift change to wake him up. But then wanted to watch Cbeebies, as he has become accustomed. We don't have it. Cue more wailing about not wanting to be at home and wanting to go back to hospital. So much so that it made the wife cry.

He had an ok day but needs more careful attention, since with his cuff up you can't be so aware of his needs if he isn't in sight (even if you are in the same room). And he has a new range of medicines which take some getting used to. Granny came over which cheered him up. But he refused to go out to buy new shoes.

Eventually succumbed to the lure of going to aunties to see the pandas. He is concerned about bright light and so was happy to wear sunglasses for the short walk over there. Even not too bad when he had to leave on the basis that I would carry him home.

But when his cuff was deflated it was as if a monster had been released. He went from being broadly cooperative to willful, unruly and totally unreasonable. Just about managed to give him a bath even though it was a wrestling match to get his clothes off and then on again. But the tape change defeated us. He would not cooperate and in the end we decided it was just too dangerous.

It makes being home seem less the lovely option that we dreamt about in hospital and more another trial. The wife and I were left feeling very unhappy that being home was now more stressful than being in hospital. How much is that his cuff being down gives him a short while in which to release a day's frustrations is not clear. But whatever, it's no fun.

Take the long way home

Well, well, well. After all that messing around on Tuesday, they let the boy go home last night. Not as great as you might imagine after a month in hospital.

After some helpful chasing by nurses on the ward, the respiratory team did turn up. They say that the CT scan is inconclusive. It shows some problem with a lobe of one lung but it is not clear whether it represents the end of the chest infection or chronic long-term damage. They have said that we need to try, at least for the time being, to protect his lung by putting the trachy cuff up whenever his secretions are significant - which is most of the time at the moment.

The doctors concluded that they are not going to treat his e.coli infection and hope that it will clear by itself before the chemo reduces his neutrophils too much. Let's hope they're right.

Having done all that, they decided that he could go home. Inevitably, this is decided at lunchtime. But it takes the rest of the afternoon to sort out medicines to take home, get a discharge letter prepared and organise transport (we'd do the latter ourselves but since he went to hospital in an ambulance and we didn't expect it today, we have no car seat).

The boy eventually got home at just before 7.00pm. Happy to help unpack for a bit but tired quickly and wanted to watch TV. Was very unhapy to have a bath. So much so that he said he didn't want to be home. He wanted to go back to hospital. Was a very difficult bath and tape change. Everyone's temper frayed and coming home felt just another battle to fight. No benefit to being home. Rather depressing end to the day.

Feel Good Inc.

At last, a good day. Tiring, but good.

There was nothing special about the day. The boy didn't have a lie in. We didn't do anything terribly interesting. He didn't achieve any developmental milestones. But we were at home and he was cheerful. And that's something in itself.

This was one of those days to enjoy something approaching normality, after having spent last weekend in hospital. It was my day to look after him. He woke up as soon as I took over. He woke in a really cheerful mood.

He watched TV for a little while, showing the animals the various characters. I gave him his chemo. We came downstairs.

He purposefully wanted to help washing the suction pump, taking the other one out of the steriliser and drying it, and helping with the washing up. "Help" is his word of the moment. He drags his chair to the sink and clambers on it so he can see what's going on.

The nurse came to give his IV antibiotic. He was very good. He scrambled upstairs to sit on the armchair in his room while he patiently watched her prepare the tray. Offered her his line and then helped tidy up and put away.

After waving her goodbye, we got packed up to go to auntie's. To my huge pleaure, he walked all the way there. First time he's done this with me since the operation at the start of December. May only be 500 yards or so but really good for him. He has been so reluctant to walk outside.

Rather sweetly, at auntie's he made me sit in a chair while they made tea and coffee. He just loves the process of making tea and coffee and I loved the fifteen minutes sit down.

We all sat on the sofa while auntie and I had our tea and coffee. He watched TV like the Queen Mother (so says auntie) as he has a cushion on his knees and his feet wrapped in a velvet scarf. When we had finished, we went upstairs to play on auntie's bed making a house from her blankets and duvet.

Came home reluctantly to see Mummy. He did start to tire after returning home but gained a second wind before bedtime by playing the game where he puts me to bed, waves me night night and turns out the light.

A good day.