(To begin this story with the end of the story, I confirm that Leo is well and has been full of beans today. I think building up suspense is great for fiction but not for the recounting of a health scare for a 17-month old.)
Once more, we have the AMAZING NHS to thank for their quick and calm response to a health scare for our little man.
I started a blog post yesterday called “Chickens Home for Roosting” intending to share the joy that my family was back under one roof. Tiredness and seizures meant that I didn’t even finish the first paragraph. It turns out, in any event, that I would have spoken too soon to state that they were Back for Good.
There Was an Old Lady Who Swatted a Fly
Our quartet was indeed reunited For One Night Only on Friday with G, J and L moving back into our “temporary accommodation” (we’ve been here nearly six months!). We had spent most of Thursday and Friday together given that Spotty Dotty’s spots had crusted over but the Quarantined Coles slept in their Quarantine Quarters on Thursday night out of an abundance of caution.
I think it was on Thursday, when we all had tea together for the first time in over a week, that a small fly was hovering over the table so I swatted (unsuccessfully) at it. Leo found this hilarious. Jennifer mimicked my action and it duly caused even more laughter from Leo. We all laughed hysterically at his increasingly hysterical and infectious laughter!
Sometime along the way, this has turned into a game of us pretending to swat a fly and saying “go away fly!”. He laughs heartily each and every time and mimics the action. Now, one only has to say “go away fly” for him to give another belly laugh before one even does the action! (The sound of my kids laughing is music to my ears and restores me in a way that nothing else can.) This is not just one of my usually irrelevant tangents, it’s the background to an important point that saved our sanity last night.
Crash and Burn
I had enjoyed a busy (for me!) day on Friday. I had been wheeled up to the Hobbit House a couple of times to make decisions on bath, shower and room sizes among other exciting decisions! We had also gone to Gibside for an hour or so in the afternoon.* Sure enough, the busy day caught up with me: not long after I woke up yesterday feeling absolutely shattered, I had a Snoozie Doozie at about 9.30am. I recovered almost the full new baseline movement in the mobility front within an hour or so and felt tired but not exhausted afterwards. Later on, at around 3.30pm, I had a Seizling, including some flickers in my foot and thigh. I then crashed and slept for a couple of hours.
Before I crashed, Leo had woken from a long nap crying and feeling very hot to the touch. Graham stripped him down to his nappy and, very much unlike Leo’s usual whirlwind ways, he snuggled in closely to “Dada”. We gave him trusty Calpol and checked his core temperature, which was normal. Jennifer’s chicken pox spots had appeared the day after she had been similarly hot and had snuggled into me for a couple of hours. Chicken pox bells were ringing so we decided that Graham and Leo should go back into Quarantine for the night in case anything developed.
When I awoke from my afternoon nap, Leo was still not himself, burning up and tired. Graham decided to take him back to the isolation house much earlier than his usual bedtime so we got Leo ready in his pyjamas and off they went. Before they left, Leo looked so sorry for himself so I tried a “go away fly” with a swatting action and he did his usual belly laugh, which reassured me.
At just after 6.30pm, which was about 30/40 minutes after they had left here, Graham rang and started the conversation with: “I need to tell you something that will shock you…”. He explained that he was pretty sure that Leo had just had a fit. Graham had just given him Calpol and was holding Leo as he stood on the changing table. Suddenly, Leo had started screaming and his arms had gone rigid. He hadn’t lost consciousness throughout the 20 seconds or so it lasted.
Graham explained that he had called 999 and an ambulance was on its way. He said that Leo was ok and had calmed down after the fit as he cuddled into Graham. Needless to say, although Graham sounded calm and reassuring, I knew he was doing it to try to stop me panicking (that ship had sailed as soon as he used the word “shock”). I knew that Graham would be stressed, anxious and panicking beyond belief as well as probably distressed after seeing Leo seizing. He said that he would keep me updated.
As Jennifer was still up, I kept up a pretence of normality (as much as I could) and told my parents what had happened when Jennifer was out of earshot. Before Jennifer went to bed, Graham texted to say that the ambulance had arrived, Leo’s temperature had shot up to 39.1, but the crew were calm and they were checking his vitals. Importantly, Graham said that Leo was alert and responsive and still laughing at the fly thing. Graham called a bit later to say that they were on their way to the hospital in the ambulance but not with the Blues and Twos.
The Waiting Room
After Jennifer had gone to bed, my parents and I sat waiting for news. Graham rang and texted as much as he could (but not regularly enough for us!) to keep us updated. I felt utterly helpless. I knew that the last place I should be, with my immune system being poisoned, was a children’s A&E department. Nonetheless, I still wanted to be there with my boys. As soon as I floated the idea of going, my Mam said I couldn’t possibly go and that was that! I knew that she was right but it didn’t make me feel any less guilty not to be there.
My mind was (understandably, I think) flashing forward to what the fit might mean for Leo. It might not surprise you that my first thought was, as the first sign of my brain tumour was a seizure, he might have a tumour too. As well as flashing forward imagining all sorts of terrifying outcomes, I flashed back to when Leo was eight days old and we took him to hospital.
Then, he had been hot and sleeping so much that we had to wake him to feed him and, even then, he mostly kept his eyes shut and barely drank any milk. I can’t remember what his exact temperature was when he was admitted into the Special Care Babies Unit but it was over 39. Back then, our little cub was ultimately diagnosed with viral meningitis after he had been sleepily unresponsive for the best part of three days. I was therefore somewhat comforted by the fact that Graham kept reassuring me last night that Leo was responsive and was still laughing heartily at the “go away fly” shtick.
I also remembered from those happy meningitis times that, after he was getting better, one of the midwives on my ward said that, as Leo had such a high temperature when he was admitted, she thought that he might be about to have a febrile fit. She had said that, although it can be distressing for parents to see, they are common with babies and children who have very high temperatures. Recalling those words last night, I was comforted to some extent last night while we waited for news.
I rationalised that we had suspected earlier in the day that Leo was coming down with chicken pox as a high temperature is common a day or so before the spots appear. After Graham had said that our boy’s temperature was coming down and sent me a photo of Leo lying on a bed in hospital looking alert and just chilling, I relaxed a bit. I felt brave enough to read about febrile seizures on the NHS website, which apparently are fits when a child has a fever over 38. I learned that, in most cases, “the high temperature is caused by an infection. Common examples are chickenpox, flu…. “. I relayed that information to Graham. I didn’t want to get my hopes up and was still emotionally worried but felt logically that this was what had probably happened.
Over the course of a couple of hours, Graham reported that: he was still responsive, alert and laughing at the “go away fly” joke; the test for a bacterial infection had come back negative; his temperature had come down further; and, they were just waiting for the doctor to examine him and confirm whether or not he could be discharged.
As Leo’s temperature was coming down his sense of mischief was going up! He was wanting to explore and causing “havoc” (in the Silver Pigeon’s words). We had a FaceTime chat: it was lovely to see him smiling, saying “mama” and, yes, I checked the “go away fly” thing several times! My parents also said hello and saw that he was looking much better. That was at about 9pm.
Still waiting for the doctor, Graham reported about 30 minutes later that Leo had fallen asleep in his arms. He woke briefly when the doctor eventually examined him. The doctor confirmed that it was a viral infection and that the infection would develop in some form over the next few days. If it is chicken pox, which it might well be, he said that Leo might not necessarily come out in any spots. Chicken pops without the pops? I hadn’t heard of such a thing.
The doctor reassured Graham that Leo’s fit didn’t mean the infection was going to be any worse for him than any other child who has the same infection but hadn’t suffered a febrile fit. Importantly, he said that it wasn’t a neurological condition but had been caused by the infection and high temperature. The only unusual thing about Leo’s seizure was that, typically, febrile seizures result in a tonic-clonic seizure (that is one that involves a loss of consciousness) but Leo had stayed conscious.
The doctor was happy to discharge Drama Boy but he offered to keep him in if it gave us reassurance. I agreed with Graham that we would rather Leo be discharged and be sleeping in his own bed at home. After the Registrar approved Leo’s discharge at about half ten, my Dad picked up my boys and took them back to the Quarantine House.
Of course, I was over the moon that Leo was discharged as we all were. However, one can’t just switch off the panic button and I didn’t easily come down from a drama such as that. I couldn’t get to sleep immediately but tiredness eventually overcame the worry after about an hour. Graham said that he was still so highly strung for a long time after he got home that he couldn’t sleep: he cleaned the bathroom instead!
Leo was full of beans this morning as I could see on FaceTime. He has been in great form all day apparently so he is hopefully over the worst of it.
I Want to Ride my Quadcycle
I (hopefully) start my fourth cycle of Temo the Chemo on Wednesday. I have blood tests tomorrow to check that my immune system is strong enough for the chemo to go ahead. Even if Leo doesn’t come out in spots, we agreed today that Leo and Graham should stay in Isolation for at least a few days. I don’t like the kids being separated but, if it isn’t chicken pox for Leo, then Jennifer (and each one of us) is at risk of catching the infection that Leo has so helpfully brought into our lives!
I said previously that Leo has never met an infection that he didn’t welcome into his system so I was surprised that he had lived in such close proximity with Jennifer without catching it. It’s typical Leo that standard chicken pox (if that’s what it is) doesn’t interest him. Gentle Jennifer has never once complained and, apart from feeling a bit under the weather the day before the spots appeared, sailed through pox-ville relatively unscathed and has been cheerful throughout. Leo, on the other hand, has upped the ante and gone for a febrile fit (and an “atypical” one at that) to add to the family collection of dramatic ailments. Despite looking like a carbon copy of his Daddy, this Prince of Drama is surely a chip off the old Drama Queen!
The Silver Bird Dog Takes Flight
The Triumverate’s logistical capabilities are being stretched and tested once more with feeling. They have all been busy with me and my usual demands, J’s pox,
now Leo’s infection, along with all the usual chores of keeping a house of six going. I have to say that they have come through it again with flying colours. I just wish they didn’t have to prove their inordinate array of talents so often, as I’m sure they do!
Graham, after the stress of the evening and twilight bathroom cleaning last night, was up after just a few hours’ sleep this morning when Leo woke up at around 7am. I think he has now gone beyond the decrepit permanently exhausted Silver Pigeon stage and has been elevated (or reduced?) to a decrepit permanently super-exhausted bird dog. What is a bird dog you might well ask?! I am reliably informed it is a North American term with the following definition:
gerund or present participle: bird-dogging
search out or pursue with dogged determination.
“reporters bird-dogged the candidates for several weeks”” [emphasis added]
Even though he’s knackered and decrepit, Graham still has dogged determination to care for his family and pursue a semblance of normality for all of us, including working on plans for the Hobbit House. Thus, he’s my Silver Bird Dog!
My parents, meanwhile, continue to go above and beyond any superlatives that I can offer. They are awesome and we couldn’t go through any single part of this without their love and support, never mind all of it at once!
I am unsure how best to express how I feel today. I am obviously relieved and happy that our boy was discharged last night without any concerns from the doctors. It’s reassuring and I’m delighted that he has been on top form today without a temperature. I feel like I watched the events from the other side of a waterfall. I was both there and not; aware of what was going on and yet not quite part of it.
It’s one further thing the Squatter has taken away from me: my ability to look after my children when they’re unwell. In fact, I can’t even be close to them to cuddle them for fear of catching an infection. Not that I could have done anything to help Leo medically but I still would have liked to be there. Graham and I could have supported each other (or fallen apart together). I can’t help but imagine times in the future when Graham might have to deal with medical emergencies and I won’t even be at the end of the phone. But that’s part of a wider issue for another day.
As with all dramaramas, it ultimately feels surreal to be living in and through them.
* This time, I borrowed one of their “off-road” mobility scooters and zoomed through the walled garden and up on to the Avenue, racing Jennifer and generally rushing about the place (so much as one can rush at 3/4 miles per hour!):