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.

Trachaeostomy 101

The boy has a trachaeostomy. I'm no doctor, but this is our experience of one.

What is it?
Trachys are plastic tubes inserted into the neck through a hole in the throat to provide oxygen directly to the lungs, rather than breathing as normally through mouth and nose.

Why have it?
Mostly, because there is some problem in the airway between mouth/nose and lungs. This isn't the boy's reason. His is because he doesn't swallow properly. Therefore there is a risk that his saliva or food will end up in his lungs (aspiration) rather than in his tummy. The trachy helps stop this happening.

Are they all the same?
No. There are lots of different types. There are standard trachys which just have the tube and nothing else. Then there are cuffed trachys. These have an extra bit round the tube to block any air (or anything else) getting past the tube. There are a range of types of used in different situations. There are foam cuffs which form permanent blockages of the throat. There are air or water cuffs which can be inflated and deflated according to need from a little bulb on the outside of the tube. The boy has a water cuff trachy. A cuffed trachy means that no air is getting past the voicebox, so that means no speech.

What about trachy care?
The water cuff has to be deflated and reinflated every twelve hours. He hates having it done. When the cuff is deflated anything sitting above the cuff has nowhere to go but down into the lungs. This makes him cough and choke until it is suctioned out.

Suctioning is a major part of trachy care. Catheters are used. These are thin flexible plastic tubes which are put into the trachy tube to suck out secretions. The trachy interferes with the body's normal way of clearing the lungs, so the catheters help it out. You have to careful to use the right size for the tube and to only put the catheter in as far as the bottom of the tube. Any further and you can irritate or damage the windpipe.

The trachy is held in place with ties and a dressing to stop the trachy rubbing on the skin. The ties go through little loops on either side of the trachy and round the neck. Some people use velcro ties. But because the boys was only 16 months when he had his fitted he would soon have figured how to undo the velcro. Instead, we have fabric ties which are knotted in place.

The ties have to be changed everyday. A two person procedure. One to cut the ties and replace them and the dressing. One to hold the trachy in place while it's being done.

How often does the trachy tube have to be changed?
This seems to vary depending on the tube. But the boy's has to be changed monthly. We do this at home. The hospital taught us to do it. Not a pleasant experience but they wouldn't have let us go home unless we'd done it.

Do they ever fall out?
Apparently yes. It's never happened to us but we are unusual. The boy is pretty careful with his and only twice has he tried to pull it out. Both times when in a rage.

Anything else?
Yes. He has to have an emergency box with him at all times. This has spare trachy (in case the one he has block), a smaller trachy (in case his normal size won't go back in), spare dressing, tapes and ties and scissors to cut the tapes plus a syringe to deflate the cuff. And he has to have portable suction equipment and catheters. There is no such thing as a simple trip outdoors for him.

Disclaimer: for proper info about trachys talk to a doctor. Don't just take advice from the Internet.

Communication Breakdown

How will the boy communicate with the world on his own?

The issue of whether and when the boy should go to school came up. Although we live in the present, there are some things that force us into forward planning. Schooling is one. We can't just decide he can go to school. There seems to be a long process that we will have to go through before this can happen, if it can happen at all. He will need a Special Needs Statement. We will have to start it now if we want him to go to school in September. It's not clear whether he can go to a normal school or whether they will prefer he went to a special school. We don't have to send him to school until he's five. But we don't know how he'll be come September. It's just such a long way away.

The trachy and the recent surgery pose him additional problems. His poor balance makes him vulnerable to other children's play. His eye problems compound that. The trachy means he needs permanent medical supervision. And his speech, such as it is, is just about intelligible to us. But who knows what teachers or other children will make of it. His language is a mixture of signs and words. No real sentences.

But I get ahead of myself. He has the start of the Special Needs Assessment tomorrow. And we are meeting a local nursery on Friday. If they don't provide someone to do 1:1 for him, either the wife will have to be with him or he can't go. And the local authority don't have to provide anything for him before he's 5. Never straightforward.

City Sickness

The wife was ill today, so returned home early from work to look after the boy.

The wife rang me soon after I arrived at work to say she was not feeling very well. She thought it was what she ate the previous evening, which I also ate. Not very inspiring to hear since I had half a bacon roll in my mouth when she called.

She did soldier on to take him to hospital for his eye check. As his right eye has no feeling and won't close, it is at some risk of permanent damage. They've found some scratches on the cornea and say the vision is "frosty" so we have new medicine for it and have to patch the good eye for an hour a day to force him to use the bad one. He is becoming too reliant on using one eye.

When she got back from the hospital, the wife rang to get me to go home. She looked terrible when I got in - goodnes knows how she managed the trip. She was slumped by a radiator looking wan.

I took over cares for the boy and she went to bed. We made coffee for me and tea for the pandas. He painted a picture for Sandy (the fluffy dog). We played with his Thomas the tank engine train set and watched it on TV.

With a bit of coaxing, I got him undressed and bathed. He took great delight in washing my face, which then extended to my hair. Got him dressed and did preparations for his trachy tape change. As he was behaving so well and showing his Postman Pat soft toy what was to happen, I did the tape change on my own for the first time. The wife will be livid when she finds out (two people are supposed to do it) but he was never at any risk. Had he thrown a strop, I might be less sanguine. There you go, the boy's life is a series of risks. What's one more?

Breaking Point

So, the boy's home. But who knows for how long. And the pressure's starting to tell on his parents.

The local hospital let him home yesterday lunchtime. He's still on IV antibiotics but its a once a day push. This should be given by the Community nurses. He seems a bit more tired than usual but otherwise ok. However, his secretions are copious, which is a worry.

The wife is tired. She had a bit of a rant last night about the local hospital. They rather leave us to our own devices during the day and use our night nurses at night. An element of a trade-off for the use of the night nurses we have always felt and usually accepted. This reduces the pressure on the ward staff during the day, as he is high maintenance, but increases it on us (especially her). But it also means they don't know much about how to care for him. They don't always check where the trachy box is or what's in it (a basic piece of trachy 101). They don't always know what the situation is with the cuff on the trachy - deflated or inflated. They don't always know suction length. And don't get much practice at how to suction him. Of course, if a nurse stays with him while the wife grabs lunch that is different. It will be a nurse with more trachy experience and we then go through all the whys and wherefores on his trachy and gastro care.

Trachys are so rare on the ward that most of the nurses have little or no experience or dealing with them. This means that their techniques, especially sterile techniques may need brushing up. The wife was ranting that a nurse tried to suction after having held the part of the catheter to go into the trachy - a big no no, especially on an immunity compromised child.

Had the same rant at lower intensity before bed. Left me trembling from too much adrenaline. Made it difficult to sleep. What I did have was anxious sleep, half listening for a call that he needed to go to hospital. He needed a lot of suctioning during the night - never a good sign.

With depressed fatalism, we feel it is only a matter of time (perhaps only days) before we are back in again. This is one of those times when you fail to see how you can continue to cope and want it all to be over.

Dangerous Times

The boy continues to recover. But he's bored of being stuck in a cubicle. This is going to make keeping him amused harder and harder.

The boy has been stuck in the cubicle for three days. He's feeling a bit better and starting to go a bit stir crazy. He's desperate to go out and play in the little car that he knows is on the ward. Up to now he has accepted that he cannot go out until the doctors say it is ok to do so. This may not hold much longer.

Unfortunately, the doctors are unlikely to say that it is ok for him to leave the cubicle. His blood results from yesterday were a mixed bag. Showed that his CRP is down (infection marker) and they haven't yet re-grown the bug that they found previously. But they also showed that he is now neutropenic again (no immunity). Has happened very quickly. A combination of the chemo and the infection destroying his immunity faster than last time he had this chemo.

The antibiotics affect his digestion and make him poo more often than normal. Combined with him scrambling round the bed makes for accidents. The wife had a bad one yesterday. Mess all over the bed, all over his legs and almost none in the nappy. Given he can re-infect himself in this way, she bathed him (below).

His boredom and frustration led to a very nasty trachy tape change last night. He was tired, wanted to go out and was thrashing around while we changes his tapes. Kept grabbing my hand which was holding the trachy. Almost pulled it off. All three of us got angry (rather unhelpfully), with me and the wife shouting at him to calm down (not very sensibly) and him shouting no all the time. As soon as it was finished, I scooped him up for a cuddle and he calmed immediately. A very stressful experience.