Here is another gripping instalment of the life and times of Baldy aka ‘the kids’ dad’. Apologies if you actually feel like you live with us at this point.
This one has got swears. I'm tired. I'm stressed. I can't spell. You've been warned.
Poor Baldy has been horribly bloody ill since March when we all got covid - or did we? What would I know. No community testing back in March. Anyhow, the kids and I got better after a few weeks. Baldy did not.
Yesterday he took a horrible turn. He is no stranger to tough days and is ‘as hard as nails’ - this is a medical term. His oxygen levels were the lowest they have ever been. Usually he is pretty responsive to the nebuliser meds. Yesterday, they weren’t even touching the sides. Short version, nausea, terrible breathing, actual throwing up and inability to pee resulted in the GP making a referral to hospital around 6.30pm. Baldy was too poorly for me to attempt taking him in our very cheap, very knackered wheelchair accessible vehicle. So, the GP asked for him to be transferred by ambulance.
At 11pm, I phoned the ambulance service to check he was on their system. He was. They just didn’t have any ambulances available. I get this. The nice lady at the ambulance service did say that if Baldy deteriorated to ring through on a 999 call. By 1am he was throwing up violently and his blood oxygen had dropped to 82% so I 999ed it. The ambulance was here within 20 minutes. The paramedics could not have been nicer. Baldy was loaded into the ambulance. One of the paramedics said words to the effect, I’m really sorry, we can’t take his wheelchair because we have no means of securing it in the back of the ambulance. Clearly, not the fault of the paramedic.
Did I mention that our wheelchair accessible vehicle is ancient, cheap and a bit shite? Adaptation to enable ambulances to transport wheelchairs would work out at approximately £50 per vehicle to achieve. As a person with functioning legs (I know, I’m showing off) I have always taken it for granted that I would take my legs to hospital with me in the event of a hospital admission by ambulance. I also assume that if I were admitted to hospital by ambulance and told it wasn’t possible to take my legs with me this would be some sort of infringement of my human rights.
The paramedics knew bugger all about Baldy - why would they? I impressed upon the paramedic that although Baldy is super articulate his independent skills are extremely limited.
Baldy texted me about 3am to tell me the oxygen was nice and the nurses were lovely. He was seen by a doctor and had a chest x ray at 4am.
My first phone call of the day was to the MS nurse. A nice lady promised to pass on the information that Baldy had been admitted to hospital. It is absolutely vital that people talk to each other. Baldy is medically complex, super poorly and super vulnerable. It’s really important to get the whole picture of what is going on for him.
I phoned the hospital about 9am. They were super busy so I called back at 10. I asked how he was doing. I was told he wasn’t out of bed. This did not inspire confidence. His wheelchair was still in his bedroom at home. How many Baldys do you have there? Have you met him? He is unable to transfer independently. I also enquired, as per the website, about visiting. The website states that patients who are vulnerable may have visitors. There is a list of what constitutes vulnerability. Yep, he ticks all those boxes. Anyway, ‘no, only end of life patients can have visitors’. Literally everything about this interaction was as blunt and inappropriate as it sounds.
I followed up this phone call with a call to PALS. The PALS lady could not be more helpful and apologetic. She confirmed that the information on the website is indeed incorrect. She agreed that the likelihood of a man who is entirely wheelchair reliant recovering the use of his legs whilst really bloody ill in hospital was remote.
I do not believe our situation or experience to be unique. You all already know I’m going to take this as far as I can. Not because I’m a grumpy old cow - although that would be a fitting description, but to ensure that others have better experiences.
I was allowed to deliver Baldy’s wheelchair to hospital. Luckily I have a car. I have spoken with Baldy and he has asked me to take the patient turner in tomorrow as moving him from the covid assessment ward to the non covid ward was a right palaver. I will phone in the morning and in my best not passive aggressive voice - because genuinely it is not the fault of the nursing staff, I’ll ask if they’d like to borrow our mobile hoist too. It’s a fucking hospital. Are disabled people super bloody healthy and never get ill? Is Baldy the first wheelchair user they’ve met?
I also, impressed upon the PALS lady that I have worked my arse off to keep this man at home and alive for the last 6 months. I’m not going to drop the ball now.
Just time for a quick rant about him getting chucked on the bloody covid assessment ward. Right, I get this. But I really didn’t want him to be exposed to covid. Ah, but it’s okay because he’s in a cubicle. Well known fact - covid cannot go over, under, around or through fucking curtains. Baldy’s swab came back covid free. Quelle bloody surprise! Thankfully all the other people he was with in the covid pit were also clear and he’s been moved to a covid clear area and is being treated for a vicious chest infection. He is on oxygen, nebulisers and big boy antibiotics he’s never even heard of. And he’s taken loads. He says they’re for horses. He might not be joking.
Yesterday, in amongst Baldy’s alarming health situation, I managed to speak to a GP for me! I explained that I’m starting to unravel. I’m super grumpy. Even more so than usual. And I perpetually feel the urge to rip people’s heads off. My tolerance for bullshit is currently zero. All in all it’s pretty antisocial. We had an amusing chat about self care. You know getting enough sleep, etc... I have a confession. I’m very childish and puerile.I have the sense of humour of a teenage boy and always think ‘self care’ is a euphemism. Fnar, fnar. Anyhow, I digress. I explained that opportunities for ‘self care’ of any sort are extremely limited for obvious practical reasons. I’ve had heaps of counselling over the years and it is great. However, right now I need something quick. The GP explained that counselling provision is like gold dust at the moment for a bunch of reasons so we skipped to the end and went for drugs! No one is more surprised than me that I’ve never used drugs of this sort before. I’m no stranger to stressful experiences. I wonder if we can do x number of stressful situations then when we pass x number we just go nope, give me the drugs. It will be an interesting experiment. I feel no stigma about using medication to support mental health and well being. After all I love a lemsip when I get a cold so let’s not be a hypocrite. The drugs I’ve been prescribed are drugs Baldy takes. I’ve been prescribed 10mg. Baldy has 40mg. He said, ‘Ooooo I’ve got some of those. Just bite a bit off’. I didn’t.
Team Baldy sprang into action. Baldy has been really touched by all your kind messages and texts. He wants me to explain that he struggles to text back at the moment but does read them all. We’ve managed a bit of chat on facetime with the kids and dog. He’s tearful, scared, really bloody grateful for oxygen and missing the kids. Thank you all so much for all that you do for all of us. We love and appreciate you all more than you’ll ever know. xxxx
**Edit 24/09/2020 Spoke with Baldy this morning. He had a really decent bit of sleep. He said again how utterly awesome the nursing staff are and how amazing the paramedics were. The issues this blog raises are systemic in policy, procedure and communication. Last time I checked all that clapping had not elevated nursing staff or paramedics to budget holding, decision making positions. If my blog results in someone who earns a lot of money laying the 'blame' with someone who earns a lot less money I shall be extremely pissed off. And I've not started my meds yet.