I wrote a post last year which touched on my own anxiety and depression ( and then promptly bottled sharing it) which mentioned briefly that when I am stressing or struggling, or just plain busy, something will crop up with Nate as if to say...
“Ha! So you thought you had something to feel anxious about did you? Hmmm? Well... dadaaa... here’s something to really worry about”.
Pretty much summing up my parenting and how we have functioned as a family for the last 8 years ( minus the wine), simply swopping one stress or anxiety trigger for another.
One of Nate’s indicators that he is brewing something of the infection variety is a slightly higher than normal (for him) heart rate overnight. Unfortunately historically this would sometimes be followed by a sudden spike in temperature and a struggle to control his breathing. This is something he hasn’t had an issue with in years so yesterday when his temperature reached 40.5 with a barking cough which was making him retch, oxygen sitting at 88, and shaking all over I was, I admit, a bit concerned. This could either result in a rapidly increasing oxygen requirement and a need for urgent medical attention, or his temperature would fluctuate and his breathing eventually settle. We have been there- waiting for an ambulance while Nate’s oxygen need has risen rapidly, panicking about what to do next. We have carried him into our local hospital shouting “ he’s not breathing”. We have watched him seize, and then are the times we have managed him at home. So not symptoms to be ignored.
There is a huge focus on emergency care plans as the “go to guide” of what to do in certain situations, but they don’t cover all scenarios, may be too brief or even too detailed. As parents we go with our gut. And my big gut was telling me it hadn’t got a fucking clue which way Nate would go with this infection. I was hesitant about ringing for an ambulance as although he wasn’t great, he was still responding. 111 were massively out of their depth and requested an ambulance for us anyway. The next issue was around which hospital to go to. I had a meeting with Nate’s respiratory consultant earlier in the year to write his emergency care plan and I wanted to include something describing the need to go to the main hospital responsible for Nate’s care so long as he was stable, rather than our more local hospital where he can’t be admitted due to his nasal ventilation. Unfortunately I hadn’t realised that during the passing around of the plan to all of the consultants involved with Nate’s care that hospital transfer statement had been removed. The main hospital refused to allow Nate to be taken there yesterday as they were incredibly busy and we ended up at our local hospital instead. For hours. And hours. Then we waited for transport to take us to the main hospital anyway. By this time Nate had perked up and we would have been happy to take him home. He had been observed for hours but hadn’t deteriorated but ( and rightly so) a dr to dr conversation with respiratory at the other hospital meant he needed to be kept overnight there.
The pressures on our NHS are so huge, and as we are now well into the winter illness season beds were in high demand- Nate received the last available one. We waited until 5am for a bed on a ward only to see a consultant at 9am and be allowed home. The discussion between the two hospitals hadn’t accurately reflected Nate’s respiratory needs and the consultant made their decision to transfer and observe based on the information they had received.
On escape from the ward ( still wearing his pjs) Nate was squeezed into a wheelchair services appointment ( don’t even ask how long it’s taken to get assessed, fund, and receive a new chair) there was no way we were missing it! As a result Nate has a new proper wheelchair, not a special needs buggy anymore.
Somehow in the transfer between hospitals we lost meds and Nate’s emergency plan so I have spent much of the evening visiting both hospitals to locate said items, and now I am sat here, after about an hr and a half of sleep at around 5.30 this morning, having a glass of red before I inevitably pass out ( through tiredness not wine) as we have a carer in tonight. I’m pretty sure she thinks I have an alcohol problem, but it’s more the fact i can enjoy a glass ( or 2) when she is here.
*cough* or 3.
Having medical care divided between hospitals is a massive pain in the arse. But really it shouldn’t be. Communication is key, and should be done well, but in high pressure situations details can be lost. Much of the decision making yesterday was left to me but as Nate hasn’t presented with respiratory issues for so long I truly couldn’t predict which way he would go so erred on the side of caution. Which I would do again. We have worked hard to keep our Nate alive and well. He has a fantastic quality of life and we will always do everything we can to preserve that. If you speak to me about Nate I always try to stress how happy he is, how loved he is, how much he loves his friends, family and carers, and enjoys a wide variety of activities. On paper he sounds terrible. I think I’ve spent at least 4 of the last 24hrs talking about all the things he gets to do, where he goes, and what he enjoys. I think I muttered “ non verbal, non mobile, gj fed, hypo ventilation... blah blah blah” a few times, I don’t like people to fixate on those things.
Focus instead on this...
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