A Missing Tooth

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By the way of pre-amble, let me say I am slightly tempted to record this as a podcast in order for the word Tooth to be pronounced ‘tuth’, rather than the more usual ‘too-th’. This is how my grandmother, Min, said it – I assume it must be a Worcestershire thing. It is how I say it to myself in my head, even though my London accent doesn’t say it out loud that often.

I have had many conversations over the past few months about Sam’s teeth. We seem to have hit a kind of critical mass of dentistry so at least four separate dentists have seen Sam or talked to me or others about him recently. They all work in different settings or hospitals, and have slightly different perspectives, of course united by their love of teeth. They also all happen to be really competent women; if only all fields were so stuffed with talent.

I am not complaining about all this attention. I have good teeth (no fillings, I am intolerably smug about it) and I have a mother who has spent significant time reminding me to brush my teeth, taking me to the dentist, banning me from eating sweets, and generally hassling me in the teeth department. I am trying my absolute best to replicate this aspect of my childhood.

Combine this with horrific stories about other disabled children’s teeth and I am hyperaware that we don’t clean Sam’s teeth very well. Sam can’t (and has never) opened his mouth more than a couple of centimetres. He has a bite reflex so clamps down on a toothbrush if it’s put between his teeth. He has high oral sensitivity and a heightened gag reflex. This all makes it practically impossible to clean his teeth effectively.

Sam is helped by the fact that he doesn’t eat so his teeth aren’t being covered in sugary snacks every day, but he also has reflux and we feed him food with carbs and sugar, so his teeth are getting contact with food albeit from the wrong direction.

We have been assured that we are doing all we can by Sam’s main dentist who is based in the community. The first time we saw her she offered useful tips and was sensible and friendly. She said she would be happy to see Eli as well, even though his dentistry is unlikely to be complex, because then I could bring the boys together. This kind of attitude is like GOLD DUST, and we have happily followed her to a different clinic further away for our visit every few months. You do not let these kind of people go unless you have to.

Sam wasn’t as enamoured with her attention as I was in early visits, and clenched his jaw tight shut as soon as she came close. No matter, we kept going, and at our visit last month Sam was relaxed enough with her to allow her a quick peek inside while the dental nurses let Eli operate the special chair.

This is progress, but the best way of knowing what’s really going on in there is to look properly when Sam is anaesthetised. It’s important to try and really see the state of his teeth as he will be unable to tell us if any of his teeth start to hurt, and any infection is likely to get pretty bad before we realise what’s going on.

Sam needs to have an (unrelated) investigative MRI in the next few months so we are trying to co-ordinate things so his teeth can be examined and cleaned while he is under general anaesthetic for the MRI. No-one wants to give him a GA purely for dentistry, but it makes perfect sense to kill two birds with one anaesthetic stone. It is a mere task of co-ordinating between the MRI department, a neurology department and two separate dentistry teams, one of which is on a different site. I don’t see what could possibly go wrong.

Meanwhile, at the half-term community appointment we had discussed Sam’s baby teeth falling out. The dentist said Sam’s teeth could start falling out any time from now. I was really anxious about it – Sam doesn’t eat, he rarely has anything in his mouth. He can’t use his hands to get a tooth out. What if his tooth fell out and we didn’t notice and he choked on it? Would he manage to swallow a tooth? What if it happened at night? Should we wiggle all of his teeth all the time and then encourage loose ones out (she thought I was overdoing it by this point)?

Three days later, I got Sam out of bed in the morning and there was a whacking great big gap in his teeth. His bottom front tooth (‘tuth’) was gone! And he was alive! I was, am, very excited and incredibly relieved. There was no sign of the tooth despite much searching of his bed, but Sam (via Granny) notified the Tooth Fairy.

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And she kindly left a pound coin. Which made us realise that because Sam can’t ask us for stuff, we’ve never given him any money. Eli is always demanding money (real or fake) but we have never thought to give Sam coins of his own. Now we need to get him a money box.

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So Sam looks cute with his toothy grin, and my fears have proved unfounded. Only 19 more teeth to go…

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‘I feel sick’

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I am having an incredibly boring couple of days. Sam has vomiting and diarrhoea. It has unfortunately coincided with the days when we do not have help from nannies/carers and Eli ‘settling in’ to a new nursery. Obviously Sam can’t go to school. It’s not really possible to look after both kids so James had to take yesterday off work. As always, my work gets pushed aside.

Any parent is familiar with the curious mix of boredom and worry that accompanies having a sick child. Eli’s developing speech means he can now tell you a lot of what he thinks or feels, so when he woke up vomiting on Saturday night he could scream ‘I sick!’. Over the next few days he could tell us that he felt sick, that he needed a cuddle, that we needed to be gentle when we changed his nappy. It’s not fun seeing him ill, but amazing that he can be so eloquent about it.

That’s the first time we’ve nursed a speaking child though an illness – we are much more used to a child who is unable to say how they feel or what they want. Sam is often sick; when he vomits we have to wait and see whether it’s a sign of illness or just another bit of reflux. It became clear yesterday that he was ill and couldn’t go to school. So ill that we stopped all food and he had small amounts of dioralyte (though his gastrostomy tube) while watching hours and hours of TV. Today he woke pale and quiet and withdrawn. By mid-afternoon today he’d had half a banana (whizzed up in the blender and pushed through his feeding tube) and was complaining that Bob the Builder was unsatisfactory entertainment so hopefully he’s on the mend.

James and I know Sam so well we can generally tell by his movements, facial expressions and noises whether he is happy or not, whether he’s in pain or content. But we never know what’s coming – he can’t tell us he feels sick before the inevitable puke. He can’t tell us he’s hungry to indicate his tummy is ready for some food. So we just have to guess, and sometimes that means what goes in comes right back out again. So. Much. Wiping. And entirely homebound.

Earlier this week Sam had a general anaesthetic in order to have some tests. Other people can have this scan without sedation but Sam would move too much. It meant a whole day in hospital while we prepared for and then he recovered from the anaesthetic. Sam’s five weeks in hospital after he was born has left us with a strong distaste for the artificial light, overheated rooms and lack of control of a stay on a ward. It never gets any easier leaving Sam after he’s been anaesthetised (he’s had two operations related to his gastrostomy), sitting around eating M&S sandwiches while wondering what’s going on, worrying that he’ll wake up and won’t know where he is. It’s horrible when they do say you can go and see him because he’s confused and upset, and looks tiny in the massive hospital bed.

One of the questions his assigned nurse had asked in the morning was whether Sam could talk. We said no, but that he understood speech. Throughout the day we told him who each new person he met was and explained what was going to happen. Sam hates any kind of fiddling (he cries when he is weighed, even though this only means being held by me while I stand on some scales) but after 45 minutes of ‘magic’ cream on his hands and a lot of warning, he was surprisingly okay about the cannula being put it. They took blood at the same time as preparing for giving him the anaesthetic. Sam has a yearly blood test to check he is getting all of the necessary nutrition, something he finds traumatic. At least this reduced the number of times he’ll need to be pierced with a needle.

In the afternoon, as he recovered and waved his bandaged arm around, he started complaining that the entertainment was not up to scratch. A sure sign that he was on the up. He then whinged when the nurse came near him with a pulse/sats monitor. His nurse understood what he was trying to say, ‘You said he couldn’t talk, but I’m in no doubt what he means.’ Indeed.