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Tonsillectomy, Sleep Apnoea, and Post-Op Bleed - our experience(2 Posts)
Hey all. My three year old son has just had his tonsils and adenoids out. Throughout the process I've been going a bit google-crazy, but often not finding information that reflects our own experiences, so I thought that if I write it all down here it might be of help to the next parent. I hope this is alright. I'm a wordy wizard so this will be long.
I'll start at the beginning:
Clark is three. He'll be four next month. Back at the beginning of this year I was starting to get quietly concerned that he never looked well. He was pale, had sunken eyes, and had had a cough for several months. He was also tiny for his age (12kg) and was failing to progress as quickly as other children in basically all areas of development. First trip to Google. I honestly don't know how, but I stumbled across some information about childhood obstructive sleep apnoea, which is a condition in which the physiology of the airway (usually enlarged tonsils) causes the child to periodically stop breathing in his or her sleep. Sleep apnoea also comes in 'central' variety, in which the brain occasionally stops sending the 'breathe' message, but this is more rare.
That night I watched Clark sleeping and , sure enough, between snores he had long pauses (up to about 30 seconds) when he wasn't breathing at all. You could see his little chest pumping away trying to get air in, but nothing was passing. Over the following few days I made a GP appointment and took a couple of videos on my phone to show what was happening.
The GP was pretty indifferent, to be honest, he didn't want to see the video, but he made a standard referral to ENT at our local hospital.
Sleep apnoea is a long-term chronic condition that affects about 1/100 children. It can causes global development delay, growth retardation, and heart problems, so it really needs sorting out. We don't see a HV anymore but, looking back at his red book I was able to see that Clark hadn't actually gained any weight in about 18 months.
The most common fix for children with obstructive sleep apnoea is to take their tonsils and adenoids out. In many cases this is like a miracle cure, and children suddenly start growing and developing properly. Sadly, our local ENT department is pretty busy and Clark's initial consultation was booked for over three months after the GP appointment, with surgery likely taking a few months after that to be scheduled. With that in mind we opted to see the NHS consultant during one of his private clinics, which was booked for the following week and only cost about £150.
Prior to the appointment we bought a little child-size oximeter (sats monitor) from Amazon and videoed Clark wearing this at night, which showed pauses in breath followed by sharp dips in oxygen saturation and raises is heart rate.
The consultation was very straightfoward; the doctor watched the video, which he said was very helpful, and suggested a sleep study and an adenotonsillectomy. He referred further treatment back to the NHS.
The gold-standard in care for anyone with suspected sleep apnoea is a full sleep study. During these several probes are attached to the head, chest, and fingers to measure heart rate, breaths, movement, sats, and electrical brain activity. These can help differentiate obstructive sleep apnoea from central sleep apnoea as, in the former, the chest will keep pumping. Some children have a mixture of the two.
Our hospital is not set up for full child sleep studies and, in any case, the consultant only wanted to get a picture of oxygen saturations throughout the night. We literally just stayed the night while Clark wore a probe on his finger, which he hated. The doctor wanted to see if his sats dipped into the 60s, as this would have triggered an HDU bed following surgery, but the lowest Clark's went was about 76.
The sleep study was in March and we were sent away to wait for a surgery date, which didn't come up until June.
Despite both the consultant and the nurses agreeing that Clark should be an inpatient for his operation (due to his low weight, his age, and the medical history of sleep apnoea) he was booked in as an outpatient due to 'the way it is funded'. We (my husband and I) were told to bring pyjamas and expect to be transferred to the children's ward for the night.
Clark was second on the list so we arrived at 8am and he has some 'magic cream' put on his hands. I don't know whether it was the cream, the environment, or hunger, but he pretty much freaked out straight away so the anaesthetist (who was lovely) wrote him up for some pre-op sedative. This was brilliant, since it not only calmed him down, but we got our first taste of seeing him drunk, which was kind of hilarious.
Pretty quickly I was called to carry him down to the theatre. He was actually so doped out by this point that I was asked to lie him straight on the bench and he didn't flinch at the cannula being inserted. Anaesthetic in, eyes rolled back, and he was away peacefully.
The operation took about 45 minutes. We were told that we'd be called to Recovery when he was awake, but the anaesthetist rushed in first asking if Clark normally got 'croupy'. A few minutes later we were asked to go to him and it transpired that his throat had swollen up as he came round causing some serious breathing difficulties. He was given an adrenalin nebuliser through a little mask, which sorted the problem, and was brought back to Outpatients on 15 minute obs. He slept, then, for probably nearly two hours.
These days you are told to get kids eating as soon as possible after a tonsillectomy, and that rough foods like toast and crisps are good because they slough off the muck and scabs. Sure enough Clark woke up and ate half a packet of Pombears.
Early afternoon we were transferred over the children's ward to stay the night. Sadly, as the anaesthetic wore off Clark was in more and more pain and, despite ibuprofen, paracetamol, and morphine he refused to eat any more. He did manage a few sips of milk.
The first night, I have to be honest, was pretty horrendous. Although we had a whole ward to ourselves, neither of us got much sleep. Clark was in a lot of pain.
The first four days and night were exactly how I expected them to be: hard. Google had warned me to make sure I gave regular painkillers rather than waiting for him to be in pain. I downloaded an app and set alarms at night to make sure we did this. Clark is also a fussy eater and drinker (he'll only drink water and milk). On about day three he suddenly refused milk, which had basically been his only source of sustenance, and it was really hard getting water into him. The internet is full of useful tips based around jelly and ice lollies and the like, but Clark refused everything. It was all hurting too much. He'd already lost half a kilo, which was probably mostly fluid.
By day five I noticed that he was even more sleepy than previously - probably due to the dehydration - and he was showing a low-grade fever on and off. I called the children's ward who told me that I should take him to A&E. it seemed pretty ludicrous to go through that route, but we later found out that due to him being booked in as a day case he had no 'direct access' back to the ward.
At A&E he perked up (obviously) although he was still showing a low grade fever so they got a doctor to see him. Long story short, I was told he was seeing an ENT, who turned out to be a student, who couldn't actually see his tonsil beds and asked me if he'd only had one tonsil removed (???) He also thought that Clark was a girl, which is understandable given his relatively long hair, but pointed to him not having read the notes, which riled me. We were sent home, after three hours, with oral antibiotics (which is fair enough) but it was too late at night to pick them up.
The following morning, due to him not having got to sleep until about 11pm, and being woken for meds at night, I 'let' Clark have a lie in until 10am, at which point he woke up screaming.
I'll never know what it was (although I'm putting it down to the sound of his swallow) but just before giving him some painkillers I asked to look in his mouth. There was blood pooling up all around his teeth.
For adults, bleeding after a tonsillectomy is pretty much expected, but in children it only happens to about 2-3/100 and, given their tiny throats and the proximity of major blood vessels, it can be pretty serious. I called the ward again (as instructed on the discharge letter) and they advised, again to either take him to A&E myself or to call an ambulance. Since we live about 20-30 minutes from the hospital, and I didn't fancy him potentially haemorrhaging in the back of the car, I went for the ambulance.
By the time the first response paramedic arrived, about 15 minutes later, Clark's throat had stopped bleeding. I estimate, judging by what I saw in his mouth and the sound of him swallowing, that it was probably only a tablespoon or so of blood. Maybe not even that. Stomachs hate blood so, if it had been any more then he would have thrown it back up. The paramedic attempted to look in his throat and couldn't see a clot so he told me that he didn't need to go to hospital. At this point I cried. I just didn't know what to do. It seemed to me that nobody had actually been able to see Clark's throat properly, and that I was getting contradicting messages about how seriously to take bleeding. The paramedic was very nice about it all, we talked it through, and although I was by then reluctant to return to A&E if it wasn't required, he persuaded me to get him checked over, so I drove up there myself.
The triage nurse at A&E was, again, not that bothered by a post-tonsillectomy bleed in a three year old, and offered to get the nurse practitioner to have a look. I know that they are professionals and they know more than me, but at this point I was 'together' enough to (gently) insist that he get seen by an ENT doctor. Again, long story short, but the A&E doctor took a look, called ENT, and (although I was convinced they'd send him home) we were sent up to the children's ward for admission.
Clark needed IV antibiotics and fluids, as well as more morphine for the pain. If he bled further it was likely they'd need to take him back to theatre to find the cause.
Happily, he showed good improvement overnight so we were sent home with oral antibiotics and instructions to steer clear of warm food, baths, sunny whether, or exertion for a few days to reduce the risk of further bleeding. That was day 7 post-op. We're day 10 now and he's doing fabulously. He's only needed painkillers once so far today. A completely different boy.
Thank you for reading our little story. I hope it can be of some help to frantic googlers after me.
Thank you OP. My tiny 4yo DD was due to have her tonsils and adenoids out tomorrow morning due to obstructive sleep apnoea but the operation was postponed last week to the 14th of July (hopefully). The post-op bleed is my biggest worry as we live rurally and we're 30 minutes from the nearest A&E so I'd have to drive there rather than risk waiting for an ambulance which could be miles away if it happened. Hope your DS continues to rally .
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