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