(Shared family breakfast via video call, whilst Joshua recovered in hospital)
As I have explained here, last year we had been experiencing problems with Joshua’s port. For some inexplicable reason, it settled down during the summer, but was happening again by the autumn.
[What is a port? see here]
Every time he had his port accessed, he got a spike in temperature, which has the unhappy consequence of a 48hr stay in hospital. We all want to avoid this, for many reasons.
In late November, he was having his monthly chemotherapy dose, at home through his port. By tea-time, he felt a bit hot and was behaving strangely – putting his head on the table. Not long after that, he was 39 degrees. Luckily Ben had arrived home from work, so with a heavy heart, we went to A&E.
Now he’s over 3yrs old, Joshua is becoming much more conscious of what is happening. Ben and Louis dropped us at hospital, but he was bewildered by the fact that they were going home and he had to stay. “Why is Louis going back to the van? Can I go home? WHY CAN’T I GO HOME TOO?”
“I WAAAAAAAAAAAAANT DAAAAAADDDDDDDDDDDYYYYYYYYYYYYYY”
This escalated to screaming in my ear in the reception area, whilst I tried to answer questions through my muffly mask to the nurse behind a screen, in a muffly mask. I don’t think I’m deaf, but I didn’t realise until now, how much I rely on a bit of lip-reading. Pardon…. (pause…) pardon? Gets embarrassing after the third pardon.
He was swabbed for many things; up the nose, back of the throat, up the bum, poor lad. His compensation was chocolate coins, which my friend Sam had dropped off in a food parcel; luckily for me.
We got off the ward relatively quickly this time, mercifully.
What was looming on the horizon though, was the next dose of chemotherapy, scheduled for Christmas Eve. I was revving up to ask for that date to be changed; otherwise we might be inflicting a hospital trip on ourselves for Christmas Day.
In our telephone chat, Dr Rachel started revisiting the long-term solution of getting his port removed. It’s a tricky one, because we didn’t want to inflict any more surgery on him than he actually needs. But this constantly-getting-infected is unsustainable… and the whole idea of him existing with potentially nasty bacteria sculling around in his body, didn’t feel acceptable.
To avoid Christmas and align it with when he was due to be having a general anaesthetic anyway, they pulled his schedule forward by a week, to the 18th December. He had his chemo at home the day before his operation. But, as is the pattern, he spiked a temperature and we had to travel in to A&E at midnight. We had gone to bed because he’d shown no signs of anything earlier. So, a sleepless night for Ben and Joshua.
Our doctors would usually cancel an operation if the patient has a temperature. But given that the solution for Joshua’s 39 degrees, is to remove this pestilent port, it went ahead anyway.
It’s hard to convey how stressful this all was at the time. It’s quite dramatic having to get out of your pyjamas with Joshua crying, in the middle of the night. I didn’t go in to A&E, but didn’t sleep well either. Worrying about Joshua being ok and whether his operation that we’d been planning for, would go ahead. All under the claustrophobic cloak of Covid that just makes life so much harder. I wanted to be with Joshua before he went in to surgery, but Louis had to be picked up from school. He can’t come in to hospital, and isn’t allowed in anyone else’s house.
I exploded in tears at my friend.
I was with Joshua when he came around from the operation – he was pretty disorientated and angry. Told me to go away. But as the keeper of the snacks, he must have realised this ultimately wasn’t in his interests.
We had a night in hospital. He recovered, his temperature dropped and we achieved his Christmas at home, which I am grateful for.