On Covid testing chaos

Prior to last week my experience of Covid testing was minimal consisting of a test in July when I felt truly terrible and could feel my temperature going up ( it eventually spiked at 40 even with antipyretics). Back in July it was pretty simple to get a test, I went online and had a test booked for 40 mins later. It was quick, efficient, and I had negative results by 6.30am the next morning. The infection I did have turned out to be Campylobacter caused by a mistake made due to tiredness ( see previous posts on lack of respite) and chicken, which is now my most hated fowl- even more so than turkey ( see distasterous performance on The Weakest Link 17 years ago). I can’t bring myself to talk about the ensuing week of food poisoning but if this was a text there would an abundance of poo emojis, and let’s just leave that there. 

So on Wednesday Nate was gasping and screaming on his way home from school, then at 8.30pm started weird screaming again. He shook all over and was extremely stiff- none of his limbs would bend and they were clamped tightly to his torso. Nate’s temperature was 37.2 ( when I managed to get under an arm) so creeping up slightly and for which we gave paracetamol and cuddles. Half an hour later his temperature was 38.8 which at least explained the shaking. Oh fuck, thought we, as I poured my Sauvignon Blanc back into it’s bottle and began our attempts to book a Covid test online. That early night wasn’t happening. I tried for hours as Nate finally settled, but had no luck. I’d seen articles online about how difficult it was going to be to get a test for him and went to bed for an early start, after breaking the news to his sister that we were home for the foreseeable which, needless to say, went down like a lead balloon.

Nate slept. He slept all night and didn’t wake the next morning. No rah rah rah early morning call. We set about trying to get a test from about 6.30am. Both myself and Michael continuously added his details to the website over the next few hours, only to be told there were no slots. I tried making up NE postcodes and Galashiels popped up at one point but even that was gone by the time I was through the system. A bit later the system kept showing availability at a Sunderland site, it allowed you to choose a time, but then looped you back to the beginning of the process. It was like trying to get concert tickets, but without the ability to buy them later for twice the price on eBay. Fucksake. There was a strong risk of me hurling my phone through the window at this point. I tried 119 ( they use exactly the same online system so had the same issues), the CCN team, and his respiratory team. There is NO system in place for giving any sort of priority testing for these children and adults who have been identified as extremely clinically vulnerable over the last 6 months. In addition how the very FUCK can people know to self isolate if people they’ve been with can’t even get a test to say they are positive. Fucking shambles.

By lunchtime Nate was still asleep but at least his temperature was normal. At this point we even had friends online trying to get us a test. An elusive spot in Durham popped up, but was quickly gone. By sheer fluke while on a call (working from home) Michael was still messing about on the site (even though the 2nd call to 119 had said to leave it till that night) and managed to select an appointment in Durham after a random handful of slots opened up. I must stress we only had the ability to keep continuously checking the site because Nate was stable and asleep. I’ve no idea how anyone can do this while ill themselves, or looking after a sick child who needs constant attention. It was bad enough having to abandon a call or my phone due to seizure sats drops.

We managed to wake Nate up a bit as getting to the arse end of Durham and back on his vent with a small cylinder of oxygen would be a challenge, but took all of his equipment with him just in case. That pissed me off as well. Having to move him I mean. It can be tricky at the best of times and needed me in the back to keep an eye on him. 

The testing site itself was calm and organised, well managed and run. The staff friendly and supportive even when Michael fucked up putting the sample bottle in the bag. It was a battle to test Nate. These nose and throat swab kits aren’t the greatest for a small boy with dagger teeth who doesn’t understand, and I’m not going to lie I really did nearly lose a finger.  Luckily the test came back negative the next morning at which point his sister immediately got ready for school ( she’s clearly sick of the sight of us). 

Since then Nate has been tired and having weird seizures, but woke up yesterday full of beans. No idea what’s been up with him. After the initial fear of Covid I must confess were all terrified of having to stay home for 2 weeks. Still scarred by shielding and lockdown, and also reminded that any virus is a risk to him actually, hmm where’s these Flu jabs?

And of course we get to do this all a-fucking -gain the next time there’s a high temperature in the house ( or other Covid symptom)- I give it 2-3 weeks. It is September after all, and there’s always a resurgence of any virus when schools go back, everyone knows this don’t they? In addition we’ve all been eating out to help out, mixing, shopping, spending, haven’t we? Surely it should be obvious going into the autumn that a greater testing capacity is vital? Alongside a fully functioning test and trace system? Surely? 

FUCKSAKE 

But don’t fear. The government has got it ALL UNDER CONTROL as we enter a North East local lockdown with restrictions which make little sense, and seem to be too little too late. It comes to something when you realise the  “circuit breaker” idea currently touted by the government was suggested by that eminent epidemiologist and public health expert Michael Jeffares 6 months ago...

Masks mask my resting bitchface and actual bitchface

So the happy dance of having Nate go back to a gastrostomy button didn’t last long. By Saturday Nate was a bit retchy and uncomfortable, unsurprising after a button change and a bit of dystonia I thought. Sunday he cried at times for what could have been a 100 different reasons, Monday was grim, Tuesday afternoon he was inconsolable. I took him to the nearest A and E. For most of the 4 hours we were there we sat in the waiting room because the paeds area was full all while Nate screamed blue murder the entire time ( and no that’s not an exaggeration). The Dr finally examined Nate. Apparently they get pissed off if you suggest other places to check- like their ears... but to be honest she’d annoyed me by making a funny voice when asking “do either of you work?” and “what do you think is wrong?” IF I KNEW WHAT WAS WRONG I WOULDNT BE WAITING 4 HOURS TO ASK YOU! Knob. Nate had no obvious signs of infection, which was oddly disappointing.  By process of elimination this historically means it must be his gut being dodgy ( which I suspected but hoped wasn’t the case) something we usually treat by accessing and using his jej- you know the one he had taken out on Thursday...  

The Dr announced she had spoken to the other hospital we deal with and stated that they were ready for him. WHAT? I was a tad confused as to why we needed to go to another hospital and stay overnight but they wanted to do some tests to check all was well with Nate’s gastrostomy the next morning. I suggested we go home and instead go there in the morning due to the fucking faff on it is going home, packing his kit, going to another hospital, going through a and e and waiting for a bed, all to then be ignored for the night. They spoke to the hospital again and this was agreed as being reasonable. 

First thing this morning we set off for hospital expecting investigations. Instead we had another almost 4 hour stay where we saw no one from gastro ( or at least don’t think we did, she definitely didn’t introduce herself that way) and they wanted another urine sample ( presumably in case the other hospital hadn’t tested it properly??). I think that’s when I started to get irritated. Then more waiting just to be asked to try food again. By then Nate was crying not screaming, and only intermittently. I pointed out the reason Nate had stopped screaming was likely the 24hrs without food and should we not be looking for the cause of the pain and a treatment? Even his new gastrostomy button looked really tight to his stomach compared to ones he’s had previously and could that not be the issue? But no, they didn’t want to do anything. They seemed happy at not knowing the source of the pain ( gave no suggestions), didn’t want to touch his new button, and generally avoided my questions. I said I wasn’t happy to try food yet. Then 10 mins later the named nurse came in to tell me the plan was to try dioralyte and then some food, maybe different ratios if he didn’t tolerate it. Nice to be listened to. I wasn’t happy with this as a plan as food was giving him excruciating pain FOR SOME UNKNOWN REASON and “seeing how he goes” seemed a bit, well, fucking cruel. We tried dioralyte which was fine and it was at this point I told them we were going home. We don’t require help getting Nate “back on food”, that’s not why we came to hospital. We thought there would be a scan and some tests. FOR FUCK SAKE. 

Now masks mask my expressions which could be a good thing because I don’t hide my feelings well, as some of you are well aware. If I have a mask on it hides my seething rage. I really hope they picked up on how fucking annoyed I was at this total waste of time. I did apologise to the nurse for being an arse to which she replied I wasn’t being an arse at all, but isn’t that something you would say to someone who was an utter arse? 

So we’ve come home. Nate still crying at times but much happier. I suppose I best try him with some food then. 

Jeffares diagnosis- irritated stomach and exacerbation of existing gut issues due to dystonia and gtube change. 

Treatment gut rest for 24-48 hrs. 

And people wonder why I am pissed off half the time. 

End of the summer term, at least I think it is anyway

It’s the end of term. Apparently. Who can tell? Fuck knows what’s been going on. 

Wear a mask- but not for another week. 

Go to the pub- but don’t be a dick. 

Maintain your distance- but only if you can.  Kids can go to school, but only some of them.

 

I stopped watching the news a few weeks ago which coincided with my back finally going after 13 weeks of caring for Nate at home. As I resisted the overwhelming urge to punch anyone holding a briefing in the face repeatedly we began to talk about how as a family we could survive the summer. Part of this involved making the decision to send Nate back to school part time for a few weeks, which we did with the support of our respiratory team, and which quickly made an impact on my back’s ability ( and opportunity) to heal. Nate met the return to school with an eye roll to me and much shouting and smiles for his staff. A massive fuck off to me, but something I appreciated-  gestures which solidified my then wavering opinion on the school return decision that this was the best course of action to take. And he has loved it. 

So my back, while still stiff, has finally stopped hurting. Pain was an issue for a while especially as the GP couldn’t quite grasp the idea I would only accept drugs that wouldn’t leave me off my nut and therefore unable to respond quickly to a young man with shit breathing. I still have a hot numb leg however, which makes me think I did something to the disc...

Throughout the lockdown and shielding Nate has continued to have his awful tonic episodes while asleep which need “some help” to resolve. He began lockdown in dramatic fashion requiring midazolam, his NPA ( nasopharyngeal airway), and emergency ventilator settings; as his oxygen sats were 30 ( or something equally shitty). That was something we were prepared for. The second one he had a few hours later whilst having the NPA in situ was a worry until the NPA was repositioned and he came out of it. Frantic phone calls the next day resulted in what can best be described as a shit batplan: we can give another dose of his rescue meds- but only if we are ready to bag him and there’s an ambulance on the way...

As lockdown continued these events have been frequent. Sats to the 40s and emergency settings on his vent needed. We are always on alert. This culminated in several of his “biggies” in the early hours of Sunday morning. Nate had a first tonic which resolved after a shake and emergency settings ( sats to 40s) then an hour later was blue and unresponsive with sats of 21. With midazolam, an NPA, and emergency settings he came round. Then an hour later he did the same again. As luck would have it paramedics were a few streets away and when they arrived his sats had come back up. He still didn’t look great to be honest, and we were worried about managing another episode at home so were blue lighted to hospital. Nate was a bit dodgy on the way, again in A and E, and was close to needing intubation; but eventually settled on a different mask.  The following night ( when back home) he had 7 of these episodes to varying degrees but we managed to dodge hospital. We refer to these events as  “tonic episodes” as although we treat as seizures neurology and respiratory don’t believe they are seizures, but are in fact an odd response to a problem with his brain stem. 

These events aren’t new and they are frequent. We never know if they will self resolve or how much intervention they will need. I worry about being too slow, about making a mistake. I worry paramedics don’t come quickly. This week I’ve cried at a few people, felt useless and gotten nowhere. I know many people involved with us feel powerless and are trying their best, but it’s been a year and a half without a break. But still we aren’t a priority to access respite as we have some care at night at home.  

I’ve been convinced for a while that I had COVID 19 in April which resulted in an awful cough and tight chest for weeks. I volunteered to donate plasma and as such was tested for antibodies. In my opinion it would be incredibly reassuring to know if I have had the virus as Nate has not been ill. If he hasn’t been infected by the person meeting his care needs alongside typical mothering he’s either had it, or I can’t see him getting it. It was surprising to find at my appointment that I’m probably not big enough to donate plasma ( but it would depend on my iron levels and weight on the day). The nurse involved did not seem to find my comments of “Oooo well I’m not actually sure of my weight...it’s been a loooong lockdown you know” “well what weight do I need to be then and I’ll see what I can do?” “ oh I’ll just keep eating cake it will be fine”. Apparently wanting to donate plasma is not a good reason for eating shit. Who knew.  To be fair it’s hard to read people wearing masks, she may have just had an even more dry sense of humour than me, and not being a bit of a knob. I was trying to help after all ( and find out if I have had it!). It would also be useful for them to have a set of scales...

The summer holidays are going to be really challenging for so many exhausted families who have already had their young people at home with them for a long time. Many are coping with challenging behaviour, medical needs, day to day caring, siblings, and still doing the usual house stuff that no one ever mentions but still needs to be done no matter what else is going on ( and yes I have seen the state of my kitchen thank you very much). I can’t see us venturing out with Nate. It’s one thing to send him into a controlled environment with a risk assessment and PPE, and other to mingle with the masses. I don’t like people at the best of times. A few trips to quiet places may happen, but not much else, that’s as long as I don’t bottle it at the last minute. Now obviously I’ve pitched the idea of doing more TikToks but for some reason the 13yo isn’t keen, can’t undertand why myself. I’ve told her we need to give the people what they want but it’s still a no. You may need to take it up with her. 

So it’s the end of the academic year 2019-2020. You couldn’t make this shit up, unless you’re Charlie Brooker, and even then you’d probably be told this latest episode of Black Mirror was a bit extreme. 

I feel like I should end this post with a dystopian reference...

May the odds be ever in your favour 

10 weeks in

It’s been 10 weeks since my son has left the house- with the exception of a trip to hospital with horrendous gut pain ( although I’m pretty sure he just wanted to get out of the house as he was remarkably chirpier once in the car, and then after being fussed over by nurses). 

We, and families like ours, hide in fear while others fuck the rules and continue to do what they like. To this day I can’t work out if people have no concept of how far 2m is, or if they don’t care. Clearly they failed their trundle wheel training in primary school. Oh for a cattle prod. Let’s not even mention my views on the latest news about BoJos adviser. Watching that arse last night attempt to explain why he decided to drive from London to Durham for childcare, then make a few “test drives” to see if his eyes were ok enough to enable him to drive home reminded me of how a Y11 school football team captain and top goal scorer circa 2005 might respond after teachers realised no coursework had been submitted.

“Fuck it, I’m not doing this coursework, I’ve things I need to do”

 “They can’t make me, don’t they know who i am?”

“Detention? Whatever, the school needs me more that I need it”

“ Those rules don’t apply to me anyway, they’ll let me off”

Thus leading to a meeting with their unfortunate parents about attitude to work. The Y11 response would likely be to relay an elaborate and utter bullshit set of reasons for not doing the said work including, but not limited to 

“Are you sure that’s what you wanted me to do?”

“Oh I didn’t think that task applied to me”

 “I didn’t think it needed to be in by then as the guidance wasn’t very clear at all” 

While explainly why I was wrong, naturally, and had completely misunderstood the situation. They didn’t regret their actions of course, obviously, as they had done nothing wrong. Their parents nodding along in agreement at poor hard done by and misunderstood Dom. And in this situation failing a GCSE due to lack of coursework instead caused the spread of illness and death. Never mind the kids who still did their work even though it meant hard and painful choices. Hmmm this analogy doesn’t quite work does it...?

I miss my friends, I miss my class team and my pupils. I miss my family. I feel useless not being able to support friends who need it. My Dad’s birthday is next week and it’s a sign of these horrific times that I’m relieved he passed away before this shitshow, as at least we all had a chance to say goodbye, unlike so many over the last few months. 

I can process what’s going on but I’m sure Nate thinks he’s been grounded. For someone with such profound learning difficulties he’s certainly been communicating how pissed off he is to be stuck in the house ( after initially being well impressed), his main form of amusement currently is a result of us yelling at his sister. Physically Nate doesn’t want to do much at the minute, and after the best of intentions for probably the first 6 weeks or so, I can’t say I blame him- my umpf to do these things has fucked off too. His bowels aren’t great either- “inactivity” says his paediatrician. Thanks for that... 

We made the decision to pull Nate and Thea from school before they officially closed, and began shielding as soon as we heard that vulnerable people should shield. Which is lucky as Nate’s “vulnerable” text only came through on the 7th May.. In the first couple of weeks we received calls from Nate’s social worker and continuing health care checking in on us, although interest seems to have fizzled out, with only the community nurses in frequent contact due to ongoing bowel issues. With me working from home, and the way school are communicating with parents I am in touch with school based professionals regularly for guidance and activities- at least they know how we are doing as a family. I have struggled this past 10 weeks with the most ridiculous physical symptoms of anxiety, all of which began to fade with the prospect of going back into work ( and yes, I know that won’t make any sense to most people), heaven knows how others are coping without support. Ideally we would like Nate to go back to school before the summer holidays as long as the infection rate decreases and shielding is over. We feel confident in arrangements school have made to keep pupils safe. I know that many people won’t understand this decision but the prospect of 5.5months of no school, no therapy, no contact with his friends or the staff he loves, no routine, and no break for us or from us is harmful in itself. Take into account the constant changes of position, meds, cares, feed, and medical stuff we do everyday, on top of 17months with no respite and things are really quite tough. We have managed ( so far) to keep the overnight care we get ( 4nights) which is a risk in itself, however Nate has one main carer who doesnt work anywhere else. Every day of Nate’s almost 10years has been about managing risk, if we weren’t prepared to take any risk he would have no quality of life at all. I think you would call our lives a continuous “dynamic risk assessment” and so at the end of June, if shielding ends, and if the infection rate is down, we will see. 

My husband’s work keeps him in constant video meetings and on calls from early morning till night. I’m not sure how he has kept going. Or kept talking. Although deciding to do a casual half marathon every weekend ( as you do) , and early dog walks must help. I should stop referring to him as a “marathon tosser”... Now if only I could block out the constant noise from him talking as he works. His work craic is shit. Mind you I’m not exactly queen of the patter at the minute either. Funnily enough we met at work many many ( many) years ago. I confess there would be no romance with  “Just need to dive on a call” Michael. I’m not convinced we would even be friends, let alone downing shots of tequila in Julies2, or rolling into work after an hour’s sleep as we had both been out at parties and thought ah well they are still out too- and will suffer tomorrow, at least we can suffer together. Good old call centres putting up with hungover 20 somethings attempting to do their work. God I miss pubs. However I do forgive of the above as Michael creates our weekly family quiz, complete with Tiktok challenges, which, quite frankly, is mint. It’s the highlight of the week.

The biggest help to my sanity and functionality is my daughter. Someone who pisses me off and amuses me in equal measures. She’s been a huge help. I don’t think many kids get pulled out of their Teams lessons to fetch meds, help with moving and handling, or just fuck it all off to “help” with their brother on the trampoline. She’s never left the house other than an occasional dog walk or run with me or her dad.  This must be incredibly difficult. We are very fortunate to live at a time when we have the technology to be able to video call friends and family, but it’s not the same, mind obviously she’s been loving doing Tiktoks with me... 

https://vm.tiktok.com/wwA5UE/

As I read the news this morning it’s all about easing lockdown, opening shops, being able to  meet with family in a bubble. I look on with jealousy as none of this will apply to us shielders. Advice for children with complex health needs was non existent in the beginning of lockdown, and now patchy at best. The plans for us seemingly non existent. And I do feel like that. That we don’t exist. Teachers send families what they can, and support via phone and video calls but these kids are missing out, and families are struggling. I have visions of shielding being extended and families being broken by September without support. The government did eventually acknowledge the need to offer these kids and families something, and so allocated funds via the Family Fund- but means tested this support. Nice. 

But all of this is simply grumbles compared to those families who haven’t been able to say goodbye to loved ones, or can’t grieve with friends and familes. Or those families simply staying away to keep their relatives safe. 

And then we see people doing whatever the fuck they like. 

Towards the current end of shielding Nate turns 10. A huge accomplishment for someone who can be quite poorly at times. I think we are going to need to do some sort of drive by and hurl cake at people from a distance. That might be a good game- get the cake through the car window... As although restrictions will have been lifted for the majority, it looks like it still won’t apply to us. 

Anyway. That’s us. 10 weeks in. 

My son

I love my son. 

He is resilient, amazing and funny. 

He loves people who love him.

He’s cheeky, loud, loves the water and a good bounce. 

He gives good ”thinking face”. 

He can melt you with a smile or a tap, or have you creased at his brucie grin. 

He will splash you, roll on you, and snuggle in. He will do a snorty giggle that will have you joining in. 

He loves a chat and a ”raaaaaah”. 

He doesn't like to be ignored. 

He shouts supporting his sister in all of her favourite activities. 

He stills at the sound of rain on a window or his rain cover. 

The wind in his face at the beach will make his eyes light up and a look of wonder fill his face.

He will spend an age exploring different textures and materials.

My son loves stories- particularly anything by Julia Donaldson.

He loves songs from shows and songs by The Prodigy. 

These are the things that matter. 

My son’s gastric transit can be sluggish or stop. He has a trans gastric jejunostomy button and uses feed or blended dairy and gluten free food.

My son is incontinent.

My son is a 32kg wheelchair user who needs hoisting. 

He can be in terrible pain and can scream on and off for days.

My son needs BIPAP ventilation with oxygen through a nasal mask to expel CO2 and keep him breathing overnight. Sometimes this doesn't work and he needs more repositioning and/or more oxygen. 

He has odd episodes where he stiffens and no air can again entry even with the ventilation. He needs to try his emergency vent settings then midazolam, and a nasopharyngeal airway if needed. These episodes are happening much more frequently. 

My son’s equipment beeps throughout the night. We need to react, we can't ignore it. 

He carries a bag and mask for resuscitation. 

My son can stay awake for days, sweating and dehydrating as his dystonia goes off on one. ”Pure radge” we call it. 

He needs careful considered monitoring. We may brush off concerns of those working with him at times, but we listen and we consider; valuing their concerns but weighing up options.

These shouldn't be the things that matter. But they seem to be what takes over. What meetings discuss. What plans hinge on.

With all of this he still isn't a priority at the only provision who can support him with his medical needs. 

There is nowhere he can go for respite. 

None-hospice respite providers will not have him due to his medical needs.

Respite foster carers cannot consider him due to his medical needs. 

We have some overnight care. It helps both my husband and myself work. Our carers are fantastic. I play netball. He plays football. Our daughter does every flipping thing she can get involved in. I love my work. I love my family and Fred. I love my netball family. I also love sleep. It's fucking amazing. 

But we need a break before we break

Why is there this gap in provision? Why is no one else allowed to, or able to do what we do every day and night? Our children and young adults have worth and value. As they live their medically complex lives we as a society will educate them, but not enable them to enjoy activities outside school other than those provided and organised by their families. As a society we can't provide a break for carers even though there is nothing available should the family break down, or die, or just not cope any more. How does this happen? How can families like ours fall into a gaping hole in service provision? Why aren't there more providers for medically complex children? This cohort of young people is ever growing. IT’S A GOOD THING that our children are living longer- we need to support them and the whole family. 

Not sure where to go from here.