Everyone thinks he looks daft

It's a bizarre life where illness is the preferable outcome.

Although the boy is quite unwell, we are pleased that he has a line infection. If the antibiotics don't deal with the infection, it might mean that he will need an operation to remove the line. But the alternative was that the tumour growth was meaning he couldn't contol his temperature. Another Hobson's choice.

Felt very tired, despite a lie in. And in low spirits. At how tired I am and so, so fearful about the boy. I look at his half-paralysed face, wondering if it's got worse over recent weeks - people staring on the train yesterday bother me. Flicking through old photos to try to work out if it is real or unwarranted. Just not sure.

One of those rare occasions when I wanted to talk to the wife about the sadness and fear of the future. But I can't. Thoughts too black for her to bear. Even recording them isn't enough tonight.

No Train To Stockholm

Tough day. Tiring day.

The boy was up very early. Not enough sleep and clearly being unwell made a difficult morning. Had to bundle him out as soon as possible to to to the hospital for another IV antibiotic. The boy wasn't happy about going out, wasn't happy about going on the train and wasn't happy about going to hospital. Nor was I.

After the IV and some paracetamol he cheered up. But when we got home I was exhausted. After the wife got up, I went to bed for an hour. Unheard of for me.

Didn't feel any better for the sleep but it must have helped. Then in the afternoon we had to do the hospital trip all over again. Taxi we ordered didn't arrive. So, we had to take the tube again. Hard work lugging him and the laden buggy up and down station stairs. But the boy enjoyed the trip and on the way home was happy to sit at the top of the stairs watching trains coming in and going out.

Not a good couple of days for me. Not exactly restful or fun. And not good for the boy. He's still pretty unwell, with a heart rate that's too high, even if his breathing is still ok and not needing oxygen. More hoping that he has a good night and doesn't try to overdo things tomorrow.

Familiar ground

Spoke too soon. Was a day off but not the first without a trip to the hospital.

The boy was cranky in the morning, in the way that he does when he's not well. The wife had arranged for the hospice to look after the boy for 3 hours, so we could have some time together.

Nice idea but didn't quite work out. Spent the first hour looking after the boy, trying to work out if we should take him to the hospital and discussing him with the consultant. The hospice did shoo me and the wife out briefly for a coffee - a strange experience to be outside with her without the boy and him not underoing an operation. But when we go back we agreed with the hospital that he should go in for a check up and IV antibiotic.

While we waited for his appointment, we did his trachy change, as the monthly change was due. He was very upset. "No tapes, no tapes". He was kicking and screaming so much so I had to hold him down pretty forcefully. Not a pleasant experience, though he hardly noticed the trachy itself being changed. The wife's hands were shaking very badly afterwards.

I took the boy to the hospital on the train. He was crying all the way there in the buggy. "No train, no train". "No doctor, no doctor". Got him into a cubicle at the hospital and had the inevitable wait for a doctor. I sat him on my lap to watch diggers on the building site opposite and after 10 minutes or so he forgot he didn't want to be there. This was reinforced when he remembered that if he got into bed he could watch kids TV. By the time the doctor had been and he'd had his IV antibiotic, the boy was rather enjoying himself and it was "no home, no home". I let him have his way as it was rush hour. But eventually, there were programmes he doesn't like and he agreed to leave.

After we got home, we got a call from the hospital to say that he does have an infection but they don't yet know whether the antibiotic he is on is the right one. We will find out later. In the meantime, we have to go back to the hospital in the morning and evening on Saturday for further IVs and then once a day thereafter.

And, of course, after his bath he insisted we change his trachy tapes, despite me telling him they didn't need to be done. Routine is routine for the boy. Try to vary it at your peril.

So much for my day off without going to hospital.

Look at the sky

Announcement over, I'm having a day off. First day off since September that doesn't involve a planned trip to hospital.

The announcement happened on Tuesday. Some initial media coverage but soon bumped down the 'news agenda' by the foot and mouth outbreak. Most people in the organisation terribly excited. Difficult to share their enthusiasm, being so tired. And then thinking about all the things to do next. They all went out to celebrate and I went home to the boy. Means I lack those shared experiences that can help bond an organisation.

The boy is still very fragile. He came off oxygen after a couple of nights but his temperature is not under control. Mostly ok in the mornings but a tendency later on to rise from about normal to fever levels in less than an hour. So, so worried that the tumour is stopping him controlling his temperature. But more blood samples taken to check for infections. Have to wait and see what happens when his antibiotic course finishes today. If he gets worse it will mean IV antibiotics. And depending what antibiotic they give him, either a daily visit or being an in-patient again.

In the evening, I watched the sky while the boy stood on a chair to look over the fence and play with next door's boy. They were watering the plants by the fence. The boy was laughing excitedly, thrilled by being able to play with another child. And I was required to repeatedly fill the boy's watering can so the game could continue. It only stopped when they were both called off for their baths.

Having A Moment

We seem to have made it through a bad night. Touch wood. The boy's still at home.

Last night was pretty dicey. But the antibiotics and some rest seem to have helped the boy. Still needed plenty of oxygen but managable amounts and his temperature is currently under control. Given the picture above, it makes the last post seem somewhat melodramatic. It wasn't. The consultant rang back this morning and she was expecting us to be in hospital. The boy's fragility means that he can decline so fast and with chest infections take so long to recover. But being a child he can sometimes bounceback equally fast.

Didn't sleep too well. Very hot and the expectation of going to hospital. Kept it very low key for the boy during the day. He seemed generally much better. If anything a bit too active in the evening, when I was trying to calm him down. Even wanted to water the plants. But upset when he got water on himself. Had to rush inside to dry his hands whenever it happened.

Hardly a relaxing weekend on which to face a big week at work. After two and a half years, announcement day is finally coming on Tuesday. But, frankly, who cares? Not me.

Hot in herre

Just when you think your worries are receding, they sneak up and whack you across the back of the head. That'll teach you to try to relax.

The boy managed the night just about ok but woke up early. Looked very tired but after coming downstairs cheered up and was acting broadly ok. Gave him some paracetamol just before luchtime and went off to auntie's house. Had a fairly quiet time there but he enjoyed himself very much. Came home and left the boy with the wife, while I had a sandwich and a sit down.

Later, he and I made preparations to cook but he was feeling very warm. Took his temperature and it was ok. Then he started to act lethargic. Bad sign. Then he lay on the floor. Very bad sign. He wouldn't go to bed so we watched TV. Took his temperature again. It had gone up, so gave him paracetamol. Eventually, even the TV was too much and he agreed to go to bed with me. But he fell asleep before I had to get in with him. He needed a fair amount of oxygen to keep his saturations up. And his heart was racing, even though he was asleep. Took his temperature again. It had gone up. The wife rang the hospital and after talking to a consultant, we got an on call GP out. Standard antibiotic prescribed. Let's hope it's enough.

Feel unreasonably emotional. Partly, it's tiredness which is worse on a Saturday. Partly, it's a fear that his requirement for paracetamol over the last couple of weeks is tumour related. And partly, it is guilt for not having spent enough time at home because of work. Don't want the boy back in hospital.

The Sidewinder Sleeps Tonight

Weary few days. Hard to know where to start.

Good things: got home on Wednesday to be told by the boy that two men had come and "old bed gone". He had been too big for his hospital cot for some time. We would have bought him a new bed ourselves but the Community Nurses said he needed a special one. It had finally arrived. It was sweet to see how excited the boy was with it. Happily telling me how big it was and demonstrating the fact by flinging himself from one end to the other, before showing me how to bounce up and down on it.

Less good: the boy has still been having fluctuating temperatures and high heart rate. All controllable by paracetamol or ibuprofen. But worrying nonetheless, since it seems to have been going on for a couple of weeks. And it was time for his rescheduled gastrostomy operation, postponed two weeks ago because he wasn't well.

Usual restriction on his overnight feed and early start. Always tricky as there is such a lot of his stuff that can't be pre-packed. Nevertheless, got to the hospital by 7.30am. The boy was happy enough to have the car journey and to play in the ward playroom for a couple of hours. But then started to get bored and restless. Wanting to go home. Just as we thought he was going to get bumped onto the afternoon list they called him down.

I had wondered how they get the tube out and the new one in but hadn't wanted to ask. The wife did. Unpleasant. The ENT surgeon cheerfully said "it's easy". You unscrew the end. You pull out the jejunostomy tube and chuck it in the bin. Then you feed a guide wire down the tube and wiggle it back out through the mouth. Stick a little balloon on the end of the tube then pull the whole thing out of the mouth. And the new one goes back the same way.

The wife had to go to another hospital for a different appointment about the boy. So, I looked after him following the operation. Inevitably, when he woke up there were innumerable questions on the "where's Mummy?" variant. He was cheerful, despite a small bleed from the trachy. But, understandably was rather hoarse. Then, the "go home" pleading until they were ready to let us go home when it became "no home".

Got the boy home to bed ok. But his temperature went up significantly, as did his breathing and heart rates. And he needed a fair bit of oxygen. Bit dicey for a while. Have to hope we can get him to rest enough to overcome whatever is the matter now without going to hospital. Just so wearying to go from one worry to the next with precious few nice bits inbetween.