So we’ve had an interesting couple of days! Toby hasn’t been well since Saturday morning and in the end was admitted to hospital. We’re home now and he’s getting better slowly.
Toby’s autism, sensory needs and lack of communication often make every day things more complicated. We think he’s probably been feeling unwell for about a week but being completely non-verbal makes identifying and diagnosing problems difficult.
Our first clue was the fact that he has been sleeping a lot…anyone who knows Toby will know that he’s not usually a big fan of sleep! He got up early Saturday morning and came and snuggled up in our bed and actually went back to sleep which is completely unheard of for him. He spent that day in bed at my parents house and didn’t want to eat anything.
He was unwell again through the night on Saturday night and his temp was really high so we rang 111 and took him in to urgent care Sunday morning. It took them 50minutes to do what would usually be a 10minute appointment mainly because he doesn’t really tolerate people touching him. Checking his blood pressure, temperature, pulse etc was challenging and in after a couple of failed attempts to look in his mouth a senior doctor managed to see that his tonsils were extremely large (whilst three other adults restrained him!) We were sent home with penicillin for ten days and told to try and manage his temp with calpol and ibuprofen – again pretty challenging when you don’t tolerate many foods or even cutlery in your mouth never mind syringes.
We usually hide medication in drinks however Toby was refusing to drink and as Sunday went on he hadn’t had a wet nappy all day. He also threw up both doses of penicillin and so we were readmitted to hospital as we weren’t sure if he was allergic to the medication and we were concerned that he was becoming dehydrated. He was seen in urgent care but then transferred up to Treetops which is the children’s ward.
The nurses on Treetops were fantastic with Toby and very understanding of his needs. They all tried to make him as settled as possible and admitted that their usual techniques and treatments may not be the best option due to his autism. Usually for dehydrated children they would do a fluids challenge which involves syringing small doses of water in to a child’s month every ten minutes or so however they didn’t want to distress him even more and so were happy for us to measure out quantities of his juice and just keep offering him small amounts in his own cup. However he kept refusing and he was very lethargic and kept throwing up. He didn’t even have the energy to play on his iPad. In the end we decided that putting a cannula in would be the best way to get fluids down him. Getting the cannula in was interesting but the staff were great.
I spent most of the night trying to stop him pulling the bandage off and the cannula out. Sharing a single hospital bed with a child with a burning fever with all the windows open and fan on was an experience! He was also prescribed a numbing spray for his tonsils to try and help him to drink again. The spray worked and he started sipping juice again.
He managed to pull his cannula out, all I heard was a ‘pop’ and it was completely out…no tears of anything! He was much happier once it was out. We were later discharged and he’s now home recovering. He’s very sleepy and low on energy but he’s recovering well.
Thank you to everyone for their prayers, support and messages and thank you to the great staff on Treetops for being so accommodating and understanding. Never a dull moment here…! The funny thing is that the boys were meant to be staying with my parents so that Joel and I could have a nice, chilled child free weekend….a few people have commented that I just needed something to blog about…ha! Anyway I always said that I didn’t want a boring life….not sure how many other children end up in hospital with tonsillitis!