Adenoidectomy - Post Operation Concerns - Please Help!!!!

[yakkiyakkiyogi]

Hiiii update on my other post www.mumsnet.com/Talk/special_needs/2440434-Operation-to-have-adenoids-and-tonsils-removed

Need advice on post operation concerns....sorry its a bit long winded....

The adenoidectomy/tonsillotomy took place on Wednesday last week. He was kept overnight keeping in mind the ASD and GDD but also becuase his oxygen percentage levels kept dropping below the acceptable levels while he slept and because he hadn't eaten or urinated for a few hours after the operation. I had already warned them that they might be waiting a couple of days at least to get him eating as he gives up eating completely even if he has a slight cold or sore throat. However, he did eat the next afternoon and we returned home with a bag full of pain killers and antibiotics.

However, literally a couple of hours after we came home he got really bad diarrhoea and twice there was blood in it. I called 111 straight away as instructed by the surgeon in the pre operation briefing and to my surprise they asked me to monitor him overnight and call the GP the next day (as it was out of hours by then) and the nurse on the other end kept assuming the blood was due to constipation (I had only mentioned once that such runny poo is uncommon for him as he suffers from chronic constipation). In any case, I just took him to A and E assuming he may have swallowed blood from his throat and it showed up in the poo. The A and E doctor said the throat didn't show bleeding now and the diarrhoea may just be due to antibiotics. She said we could continue with pain killer suppositries as we were and sent us back home.

Next two days went by fine, no blood in poo and he was eating once a day but having some milk and water alongside to keep him going. On Sunday evening, he had dinner as he normally would and then just stopped eating and drinking completely. He refused water and even milk (he never refuses milk!!!). When it was almost 24 hours of no food and drink, I called 111 and was again asked to call the GP as it was within hours so none of their medical staff could speak to me. The GP said they followed the 10 hour guideline for fluid intake and it may be that his pain levels were peaking now which is usual days 5 -10 for such an operation and advised to take to A and E. Took him there and waited for ages even though I had told him it was a post operation problem and informed of his ASD etc. They atleast offered to put us up in a separate cubicle rather than the waiting area so he'd be safe from catching infection from other children (surgeon had said to be not around any children for atleast a week). After spending more than 3 hours waiting the doctor who saw him asked me to go back to the A and E of the hospital where the operation had taken place after montoring for another day (that is further off from where we live and I had taken him to the nearest A and E as advised)!!!! She said he didn't look dehydrated.

He has had 4 oz of milk, 6 breakfast biscuits and 1 beaker of water since this morning now (ate and drank after more than 36 hours!!!) He is again refusing food, water and milk since then so hasnt had any lunch or any water or milk ive given him throughout the day. I am sooooo confused what to do. Should I take him to the other hospital's A and E or just wait it out at home? I just dont want to have the same thing as yesterday and expose him to infections and have no reason or solution given.

P.s. I have been keeping on top of all pain killers and he always has some in his system and I have a feeling this may be due to bleeding or something else

[Lesley25]

It sounds like the scabs at the back of his throat are becoming loose after he eats and maybe bleeds then scabs again. This happened to my ds 7 days exactly after the operation but he bled quite a bit and the only way we knew was when he vomited it out.
It sounds a bit of a farce what you've been put through and I'd be tempted to keep looking at his poo for any signs and his general colour, my ds was literally becoming paler by the hour refused food after a bite and then vomited so we knew. I would call the children's stood of the hospital where your ds had the operation who should ask the surgeons/docs on duty what to do. They will give the advice and should give you a time/ bed if they think it necessary to review your ds overnight. Going back to that hospital a and e will only lead you to the same outcome - whereby they speak to the children's ward and docs on site. You'll get more joy going direct by phone then waiting in a and e with the infection risk.

[iwanttoscream]

The blood could be from the op, not sure about the diarrhoea?
The blood took it's time to travel through his body.
Could be the shock of the op?
It's good news no post op bleed, as that is always the biggest fear.
Has DS passed enough urine today.
Does he like yoghurts or soft foods?
Use the check list for dehydration on NHS direct.
It's always worrying when your children won't eat or drink.
Maybe post on children's health as well.
You must be shattered, make sure you get some rest when DS is asleep.

[Schrodingersmum]

Blood from the surgery would only be visible in faeces as dark brown due to passing through the digestive tract, it is very irritating to the stomach and would be more likley to be vomitted up
Red blood in faeces would be from the gut, possibly due to irritation by the antibiotics which honestly sound like they are causing more problems than they are preventing
Post op bleeding secondary to infection typically occurs 10-14 days post surgery so is unlikely to be the problem
The pain from tonsillectomy is one of the worst Ive ever had and I live with chronic pain, does he like little puddings, soft cold high kcal foods? Try timing food to about an hour after pain killers, this is the point of optimum pain relief, it does get better after about 5 days but is very rough for some till then
If you have concerns I would contact the ward he was treated on rather than 111, the staff will be able to gauge whether he needs to see the treatment team again in clinic and arrange follow up if necessary

[yakkiyakkiyogi]

Thanks for all the lovely advice. I'm keeping a close eye on his complexion and although he does seem a bit paler than usual, it isn't a massive difference from his usual skin colour.

The good news, however, is that he has started eating and drinking and although it isn't as much as his usual diet (which isn't much in any case - he has a very limited and restricted diet due to sensory reasons) but at least its enough to assure me that he wont become dehydrated. He only has chewy food so I'm out of luck with the yogurts, custards etc. But I have made soft parathas (Indian bread) for him and he has eaten it very happily.

The diarrhoea has also improved a bit and isn't as watery and smelly as before (sorry tmi!!!) Hope I'm right in thinking the worst is over (fingers crossed).

I did call the hospital and asked to speak with the ENT deptt as wella s the ward but apparently they CAN'T put me through to them just like that and the only option I have, as advised, is to take him to A and E of the hospital he was operated at if I have any concerns.

[Schrodingersmum]

It sounds like he is on the mend for you, your hospital is totally obstructive in not talking to you, we always had an open policy and our surgical liason nurse was always happy to chat
Paratha sounds good as it will continue cleaning the throat which reduces infection much like toast. Many people don't realise that blood vessels are esentially burned (diathermy) shut and burns really hurt bless him
You will almost certainly find that he will suddenly be unfillable when he's finally back to normal and recoup any lost weight. DD Is also very sensory so I know what you mean about eating what they like

[yakkiyakkiyogi]

Seems like I spoke to soon!!!! Last night around 10 pm I noticed red splotches on the soles of his feet and realised they were all over both feet, some on the legs, arms and torso!! Got very panicked thinking what if this is meningitis but thank God it wasn't (thanks to the glass test). He didn't seem too bothered by it but was scratching his torso and legs a bit.

So I called 111 again and went over all the incidents of the past week again and was told a doctor will call me within 2 hours. Was quite taken aback as in my head this was a reaction to a medication possibly Amoxicillin and hence was urgent but perhaps not so from their perspective. In any case, the call came within the hour and I was advised to monitor overnight and take to Urgent Care Centre at a hospital if rashes didn't disappear and give a dose of Piriton if available to reduce it and ease itching. Luckily I had some at home but it didn't work much as overnight the rash spread to his chin and more on torso and arms and he was scratching more. Took him to the hospital he was operated at just so his throat could be checked too. They didn't let me go to the Urgent care centre and escalated it to children's A & E and he was seen by a triage nurse almost straight away. But after that they made us wait more than 2 hours!!! By the end of 2 hours I had lost my patience because they kept saying there were 2 in front of him every time I asked and wouldn't take into account the fact that he was a very young child with special needs non verbal who has just recently had an operation and is at a risk of infections in the A & E full of sneezing, coughing children. One doctor took mercy on us and saw him within 20 minutes.

She wouldn't say if it was a reaction to any medication and wouldn't do any checks to find out either . And even if it was then since we aren't giving him the Amoxicillin any more so nothing would be done. She said her "second option" (which I took to mean as "guess") was that its hand, foot and mouth disease in which case they still dont do anything except give Piriton to ease itching. She advised to come back (again!!!!) if he gets lesions inside the mouth and throat and stops eating and drinking to get an IV drip. So we were sent back (once again) with instructions to monitor at home.

Its a joke really that they didn't even try to find a cause for this and tried to separate it from the recent concerns or as a consequence of post operative care. Scares me to think if this attitude is for children then there is no hope for us grown ups God forbid if we are poorly.

[Schrodingersmum]

So sorry for you, given the antibiotic diarrohea its quite possible that it was them but there does seem to be a bit of an epedemic of hand foot and mouth at the moment too in our area, poor you and poor little chap
If you can try and get some probiotics into him that will help settle one problem for you, if the rash continues more than 24 hours after stopping antibiotics then it may well be hfm sadly

[yakkiyakkiyogi]

After a ton of research and comparison of hfm and DS's allergy pics, I was convinced it wasn't hfm. Spoke to duty doctor at GP's and got an appointment, doctor had one look and confirmed it was not hfm and was definitely a reaction to Amoxicillin. I shared my concerns that it was Erythma Multiforme and he said that it may well be that even though the rash isn't of its typical type but since its "multiform" then this could be a different form of it. Advised to use anti histamine and lots of fluid and return if rash gets worse, skin gets flaky and ulcers form in and around the mouth.

Ive seen improvement since this morning thank God!!! and now feel more at ease since its known and recognized what it is rather than a complete misdiagnosis of hfm by the A & E doctor. Its now been put on records that he is allergic to Amoxicillin.