We get on

Hard, hard day at work. But still managed to get home early for time with the boy.

Work was harder today. And having got yesterday out of the way, I was better able to concentrate. Also, it was non-stop. Went to the local hospital on the way to work to collect anti-agitation medicine. Then after a Board meeting had to go to the Big National Hospital to meet a doctor and go through the boy's final phase pack of medicines - pain management, nausea/vomiting, agitation, seizure and changes in breathing. And then back to work for another meeting before home.

Got home to find the boy in good spirits, after an unusually good night's sleep. He was sitting on the floor cooking with Mummy. Making apple pie. There are limited things he can do now - spooning the flour, brushing egg and pricking the pastry - but he still loves to be cooking. He was so engrossed that he refused to let me get changed out of my suit until the pie was finished.

Once the pie was finished, he was looking through his recipe book for the next thing to cook. He found the recipe he wanted but was missing one of the ingredients. Undaunted, he announced we would all go to the shops to buy it.

When we got back he looked very tired. And even though he wanted to continue cooking, I persuaded him to sit and watch TV for a while. Then he had his bath unhappily. This was accompanied by a litany of "I no like bath. I no like tapes. I no like bed". He was being very difficult and flinging himself around. But order was restored by promising him a new bedtime book. Very bad in any parental manual but we are beyond manuals now.

Although we would have preferred him to go to bed, he made a big fuss and managed to stay awake until the nurse came. He pre-bedtime routine is now severely curtailed. He can't throw cushions. He can't quite pull the cushion from under Mummy's head and he can't turn the night light on. Has to drag himself around using a bottom shuffle. Can't really crawl now, with the left-sided palsy.

When he had his story and me and the wife got back downstairs, the wife got upset about how little he could do of his former nighttime routine. I didn't exacly help by snapping at her as her crying upsets me and depletes my reserves of energy trying to comfort her. Very selfish of me. Her positivity and focus on the now helps get through the days but doesn't always mean that she recognises changes in the boy until they have become inescapable. My downbeat nature sees the changes much earlier but makes me less happy. Hers is probably the better approach.

Fade to grey

Back to work. But left early. Glad I did. The boy was tired and fell asleep soon after my normal time for coming home.

Work was hard. Couldn't concentrate for anything other than short periods and even then not on anything difficult. Told my boss the situation and agreed that I will work Weds and Thurs but then have until the end of the following week off. Glad to be able to finish a mid-afternoon meeting and then go home.

The boy was looking tired and finding even the simplest things an effort. And he's now not always able to hold himself up properly, even when sitting on the floor. He is easily over-balanced. And the left-sided palsy means he can't easily stop himself tipping over.

But he was happy to see me and for us to go upstairs while I got changed out of my suit. I sat him on the bed whilst I did so. I brought him the washing basket to put the clothes in, since he can no longer do it. He was happy to throw the clothes in.

We then went to his room to play. Little panda needed yet another blood test and dressing change. Was nice quiet time together deciding what things needed to go into the tray. Getting stuff from the cupboard. Him telling me what order to do things. Him making me wear gloves - he thought it very amusing that with sweaty hands I struggled for ages to get them on. And once the dressing is on, he said I had to draw a face on it (a nurse once did this last year). Eyes, mouth, ears, chin, nose and hair. He seemed to approve of the results.

We then went downstairs to watch TV as he looked washed out. After half an hour he fell asleep and we put him to bed. And so I sit, typing and watching him. His breathing has become shallow but not yet erratic. The wife is on the phone to find out what, if anthing, we do when the next step in decline happens - his breathing will becone erratic, especially at night. This will happen as the tumour afftects his automatic breathing centre. But we hope he is unlikely to notice it happening. Nevertheless, we've ordered some medicine to help and a pack of palliative medicine which I will collect from the hospital tomorrow.

They don't tell you this at ante-natal classes.

The prayer

Didn't sleep well. Party across the road. Rowdy pub not so far away. And the wife going on late at night about being asked to go to church to pray for the boy as a mother's prayer is strongest.

The boy continues to weaken. Cannot stand up without support. And probably could not manage the little assisted walking he did two days ago.

Went to auntie's house for lunch. He made no attempt to play hide and seek as he can no longer manage the stairs. He was still thrilled to call for the cat (whose name he insists is "cat") and to watch it have some cat milk from the security of the kitchen floor. He even got close enough to stroke it. Even though he got tired very quickly, he still wanted to observe (not help anymore) auntie load the dishwasher and to help make tea and coffee. He can't quite open the tea caddy anymore but he will put the tea bags in the cup. He does push the plunger down on the coffee. And he will stir the drinks and tap the spoon on the rim of the cup.

Granny was there. She was shocked at the extent of the decline over the last two weeks. Plaintively asking me if he will be well enough by Christmas for his present which she bought last week. I said I didn't know, rather than saying the truth.

We took him home by early evening as he was tired and increasingly lethargic. We were worried and keen for him to go to bed. But the night nurse was late and he didn't want to go to bed until she arrived. Luckily, 90 minutes in front of the TV had given him enough strength to cheerfully sit on the stairs to wait for her. Got a nice kiss and cuddle when I left him for Mummy to read him a story.

He is remarkable. He doesn't complain about the things he can no longer do. He only complains about the things he always did. Like being made to leave auntie's before he's good and ready. About having to go for his bath before the end of the programme he's watching. And me not hiding for him to find when I'm supposed to.

Sunny afternoon

Sunday is my lie in day. Struggled to sleep in. Tired but anxiety dreams dominated.

When I got up, I had to read the paper to stop thinking about the boy and the end. Too upsetting if I didn't.

The boy went to the market. He seemed pleased with his purchases. Wouldn't rest when he got back. Keen to do more cooking. To remain active.

It was a sunny day, so we spent some more time in the garden in the late afternoon. One of us holding his hand as he tottered round the garden doing watering. Have to make sure his watering can is not too heavy for him.

He is the most cheerful of the three of us. His lack of use of his left hand is more pronounced today. Everything with his right hand. When he went to bed, we have had to restrict his routine as he can't manage hide and seek any more. He was very tired and after a book was happy to have a nebuliser to go to sleep. But did struggle upright to give me a kiss and a hug when I left the room. And blew me kisses.

How soon is now?

Had to leave the house after putting the boy to bed. Lump in my throat so big it was stopping me speaking. Eyes welling up. Couldn't let the wife see and puncture her relentless positivity.

The boy didn't want to do much in the morning. But auntie coming cheered him up. He told auntie he loved her and gave her a big hug. When she left, amazingly, he walked down the road with her, holding mummy's hand.

He was worn out when he got back. But after a rest we made biscuits. Felt conscious that this might be the last time. Noticed today that he is favouring his right hand. He can still move the left but can't grip things very well. By bedtime he was utterly worn out and floppy. Was just too much for me to bear.

What to do? What will happen? How soon? Will he suffer? How much does he understand?

Dark come soon

We've always tried to make bath time and the bed time a clear routine. The boy likes routine and is offended if we try to vary it. Such an important part of his day but another thing that is becoming more difficult for him to manage.

Preparation is required. First, his bedroom has to be prepared. Syringes, sterile water, feed sets, gloves and paper towels have to be restocked. Trachy tapes have to be prepared and the tape changing paraphenalia assembled. Then, stuff from downstairs has to come upstairs: the changing mat, the spare suction pump, sterilised nebuliser, bottle of milk and toys thrown downstairs in the morning. Then the bathroom prepared with changing mat, suction pump, nappy, nappy sack, wipes, alcowipe, new vest, pyjamas, glove, sticky tape, adhesive remover wipe. And the bath run. If I do it, I seem to spend so much time worrying about getting everthing ready that I forget to run the bath.

Only then does the boy choose who of his toys comes up to the bathroom with him.

After the bath we do trachy tapes. Then I hide and he comes to find me. We go back to his bed room and play throwing cushions, followed by pretend sleeping (Mummy sleeps and after a minute the boy pulls the cushion away from under her head). Then it's a story before bed. But it is harder for him to walk to look around now. And he struggles to properly throw the cushions.

Hard not to be focusing on the negative all the time. The wife is working hard to remain positive. I'm finding it much more difficult, seeing the things he can't do, rather than the things he can do. Must find a way to stop.

Original bedroom rocker

Feels like the end is accelerating towards us. The boy did very little walking and that which he did almost alway required something to support him. Which makes wasting a day that bit more sad.

Another Friday off. Another Friday taking the boy to hospital. Got home from work on Thursday and was barely in the door when the phone rang. I looked after the boy whilst the wife took the call. Knew it wasn't good as she was pacing restlessly up and down. Turned out that his last blood cultures showed that the infection from two weeks ago was still there. So, he'd need more antibiotics. But this time not an injection once a day but an infusion twice a day. Meaning a three hour procedure, plus travel and waiting time twice a day. Call it ten hours a day minimum. For ten days. And it's one he reacts badly to - comes out in a rash.

The wife and the hospital agree that this is not a great option for the boy. The doctors will think about it overnight. I said I'd deal with the boy on Friday, so the wife could have a lie in. The boy had a bit of a lie in too. So we had a slow start to the day. The boy had been watching a DVD the day before where Peppa Pig goes camping and decided that he needed a tent. I said we didn't have one. So he announced that he wanted to buy one and got very upset when I said we would wait and see when Mummy got up. "Want camping" he kept saying.

Was hoping for a break when the carer came round for a few hours and the wife got up. The carer arrived. The wife got up. The hospital rang. They had considered it and the boy needed to go in. I grabbed a sandwich and off we went. The wife stayed to do training with the carer for when the boy goes to nursery. It is only just over two weeks away but the chances of him ever going seem to be receding rapidly.

After a short wait on the ward, the nurses got him weighed and his stats done. After a further wait he got his anti-histamine ahead of the antibiotic. The boy was patient with the delay, once we got the TV working. Then there was a long delay but the boy amused himself by building a tower of bricks with a girl. The nurses couldn't give the antibiotic, as it hadn't been signed off by the doctor and he had disappeared. Eventually, after waiting three hours, the doctor arrived. He said there had been some confusion as to whether the most recent cultures were negative or positive for infection. After another hour's wait, he returned to conclude that nothing should be done while we waited for further cultures to be processed (to avoid unnecessary IV antibiotics being given) and we could go home. In the middle of rush hour. On a Friday.

After more waiting, whilst the boy decided whether he wanted to go home or not, we left. The boy was adamant that he did not want to go by train this time. He wanted to go on a bus. I refused because of the time. After much crossness on both sides we compromised on a taxi. And arrived home just in time to get ready for his bath.

Paint The Silence

The boy has got back into painting after a long break. The wife bought new brushes, paints and paper plates to paint on. Good to see him back at it, even if his hand-eye coordination is not what it was. And he tires much more quickly than he did even a couple of weeks ago. This is making him very reluctant to go outside or walk up the stairs.

It is a curious thing. The tumour is on the brain stem. This means that it affects lower brain function - balance, breathing, vocal cords and his right eye. But his higher brain functions are unaffected. He is learning new words and extending his sentences at the same time as his ability to say them declines.

I thought that I was prepared for the end. Goodness knows, I've spend enought time thinking about it over the last two years. But I'm just not. I am less and less distracted by work. Wanting not to be there. But finding being with the boy harder and so so upsetting.

Why does my heart feel so bad?

I don't know how close the boy is to the end. But Sunday felt like we took a significant step in that direction.

He had been fine in the morning and had gone to the hospital for his antibiotic. When he got back he didn't look too good and so we got him to sit on the sofa to watch DVDs. He was very lethargic but eventually perked up after a couple of hours and ibuprofen. But when he got off the sofa he could not stand up unaided.

His balance has never been brilliant but he has managed. But this time he needed to hold on to things to stop falling over. He did recover a bit later in the day but his balance is definitely worse than it was on Saturday. The pressure from the tumour must be building up.

The wife and I are very upset. Made coming home yesterday something to dread. Fearful of what will have changed during the day. He doesn't look the boy he was two months ago. Makes you so, so pessimistic of where we will be by the end of September. But with all our worries, the boy remains cheerful and happy to play when I got home. I told him l loved him last night. He screwed his face up seriously and said "I like you too Dada." Makes me want to cry.

Bastard 97 made me do it

(that's me in the corner)

The boy slept in but you wouldn't have known it. And in the afternoon, I went out for the first time since May 06. But the boy overshadows everything.

The boy had a decent lie in. But woke up as if he had a short sleep. Cheerful but easily upset. He was still iin bed when Z's mother came round. He was happy for her to come to his bedroom whilst he got dressed. Happy for her to have coffee and then leave. But very, very unhappy when I told him we had to take the train to go to the hospital for his antibiotic. Flung himself on the floor for 20 mins. After trying to cajole him for a while, I gave up an hung up the washing and prepared the buggy. He told me he had been crying when I collected him to leave. All the way to the station it was "no train, no train, I no like trains". But one on the train he was fine. Refused to get out of the buggy in the hospital but once we left it was "no home, no home". So we looked at the big trains in the mainline station for a while before going home.

After doing handover with the wife, I went off to a boat party. My first time out for the year - since May last year. Felt very guilty for doing it. For abandoning the boy. Felt a bit fish out of water when I got there. What was I doing going somewhere I had only met two people once before? And more two years ago at that After an awkward hour, I got to talking to a few people and enjoyed it. But as time went on thought more and more about the boy. Too uncomfortable to be there. So left early.

Smile

There are days when you can pretend that the boy's going to carry on. And then there are days when you have no option but face it (sic).

The paralysis of the boy's face has become more and more pronounced in the last couple of weeks. Acutely so when he smiles. So much so that I decided to broach it with the wife. She admitted she had been thinking the same. She was very upset, both at the time and then late at night (her usual pattern).

External evidence of the tumour - growth along the optic nerve perhaps - makes me think again about the closeness of his end. Renewed feelings of guilt about whether we should be doing more and of frustrated helplessness.

Bloodline (The Visitor Maximix)

The line infection means that the boy's line is being accessed on a daily basis for his antibiotics. This has reminded him of the process for changing dressings and taking bloods. And that little panda has a line and so he needs to have his bloods taken.

I got home last night to be hauled upstairs by the boy saying "bung, bung". I had no idea what was going on after a stupefying day. He took me into his room, dragged little panda off the bed and made me watch his preparations. He emptied out the tray that the community nurses use and started to get everything together: syringes, alcowipes, dressing, hepsal, saline, adhesive remover, gloves, cleanser, sterile wipes and line port (which everyone calls "bungs"). When he was satisfied that he had everything, I had to put the gloves on and start preparations. I had to clean the tray but then he took over. He put everything neatly in the tray, cleaned the bung, took bloods, put the blood in the bottle, shook the bottle, took off the old dressing, put on the new bung and finally replace the dressing. All the while saying "good boy" in a soothing voice to little panda, like the nurses do to him.

I found it a bit of a sobering experience to see him do that. He used to play with hospital equipment in preference to his normal toys. But this year he had been doing it less and less. It is easier when he plays with cars and does cooking to pretend to be normal. This sort of play is just another reminder that we aren't normal.

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.