On Children In Need

Prepare yourself. I’m going to sound like a massive dickhead here. 

Children in need. I don’t like it. 

I mean I LIKE that a huge amount of money raised is put to good use, many really valuable projects rely heavily on CIN, who would object to that? And I LOVE the fun and silliness, and have my own Pudsey stuff and enjoy being involved. But equally is pisses me off.

The sob stories and sad music. I can’t watch them, but worse (from my perspective)  is the heavily emotional reactIons I see on social media. If I watch I bawl my eyes out too, but apart from the money aspect is this a helpful narrative? In my opinion no. 

In general it’s empathy, understanding and support that’s needed, not sympathy.  

These children should be remembered and supported everyday, not just one day a year. They should be remembered by governments and media when they push the benefit scrounger rhetoric. They should be remembered when people plan how accessible their buildings and areas are. They should be remembered when governments are developing policies and completely disregard children with SEN, and are cutting resources. They should be remembered when you’re just nipping into the shops and think it’s ok to block a pavement or borrow a disabled space. They should be remembered in how you talk to your children about disability and inclusion. They should be remembered in how you set up your services and educate your staff. And if we are lucky, these cute disabled children will grow into adults, and adult services are shambolic and a whole other catalog of issues face these adults and their families. They need to be remembered then.

So today and tonight, enjoy, give money, but talk about the situations you see. Comment on the struggles, but remember the girl appearing really sad in the wheelchair because she’s needs something to make her life better, will still have a brilliant life, she just needs some funding. It isn’t sad she’s in a wheelchair, it’s sad she’s having to share a sad story to get the things she needs. If that makes sense? 

Apologies for when I get irritated by people sharing “ it’s so sad” “the poor children” “feeling grateful” ”holding my kids closer” those feelings are all perfectly valid, but it’s what you do next that matters. 

CIN is too close to home with many of the kids on screen similar to Nate. And then that leads to the discussion around quality of life. Don’t get me started on the societal misconceptions around this. 

Not all doom and gloom, just different.

Making decisions and pushing through

Last year at a routine appointment Drs realised Nate hadn’t had a hip X Ray for a bit and so we nipped up to get one done while we were there. And by “a bit” I mean, like 3 years or so (fucksake COVID.). Fast forward to weeks later and we received 2 almost identical copies of the same detailed letter from the clinic. Luckily, I read the updated one first. At the end of the lengthy document there was a short paragraph stating his right hip was dislocated and his left was on it’s way out. At this point Nate didn’t seem in too much discomfort so we were happy getting advice about what he should and shouldn’t be doing physically and waited to hear from ortho as a referral had been put in. By January, when we had a telephone appt with the consultant, Nate was clearly becoming uncomfortable, crying in pain if in one position too long, and wincing with a sharp intake of breath during some movements. The surgeon wanted to see him in clinic as it sounded like he would need surgery. By April Nate wasn’t tolerating days out and when we saw the surgeon he described what he would do in surgery, the huge anaesthetic risk to Nate, the discussion with the respiratory team, and the degree of planning required to do the procedure safely with regards to Nate’s chest. He would need a PICU bed I was told to plan for a lengthy stay, and that it would be done as soon as possible. 

As we entered the summer months professionals around us chased and chased an op date but lists were cancelled due to strike action ( 100% support this but it really did hold things up). Finally we got a pre op date - on our 20th wedding anniversary in July. Of course nothing quite says “happy fucking anniversary” like discussing a risky operation. The pre op was awful. No date for op and the anaesthetist was unhelpful and had an incredibly arrogant attitude asking ME what the plan was and offering delights incredulously such as “ what are you worried about I deal with kids like this all the time” “ why do you think he needs a bed on PICU, we won’t be booking a bed, this is a straightforward operation he will go to a ward” and “no there’s been no big planning meeting and if there was you wouldn’t be included anyway” and a final “are you ok mum?” by the pre op nurse. Of course my response was that I wasn’t ok but instead of getting angry and annoyed I did my typical and became frustrated and upset instead. The times Nate has been most at risk has been when people assume things about his condition and his health and have refused to ask for advice from health professionals who know him best, or actually listen to us. 

Also I’m not your fucking mum.

It was implied that the op would be performed late summer, but this didn’t happen. More chasing lead to an unexpected hip appointment with a different surgeon. I’ll be honest, the idea of another appointment pissed me off. But we attended and met the surgeon and a different anaesthetist. The appointment was a long one and they described in detail their plan to do both Nate’s hips if he was stable after the right one was sorted.  It was clear from the start of the appointment how much thought and research had gone into this plan. It took into account what Nate likes to do, his level of mobility and plans for this, and his ATRX. The brutality of the surgery, risks, and recovery meant whether to go forward with it was a huge decision. 

The most important thing for us has always been to give Nate to best quality of life we can. Quality of life for someone with PMLD and complex health issues is often something society does not understand. A huge amount of work was put into a great document “PMLD standards” that even health and teaching professionals remain unaware of ( and I include OFSTED in this).

https://www.pmldlink.org.uk/wp-content/uploads/2017/11/Standards-PMLD-h-web.pdf

For Nate good quality of life means being able to be close with his family and friends, including lying next to his friends and rolling about and enjoying school. Having new experiences and being out and about are things he loves. Watching football - his dad and sister playing, is a massive part of Nate’s ( and my) weekend. The more dramatic the better especially with a bit of choice language thrown in. However, we had reached a point where taking Nate anywhere was difficult as he became uncomfortable, and wasn’t able to remain in his chair very long. Or any position really. His hips were affecting his quality of life.

In everything we do, every decision we make, we weigh up risk. Is it an “acceptable risk”? It’s why despite his dodgy health we took him to Florida, on a cruise, and regularly around the country. He’s been on “planes trains automobiles… and boats”. It takes planning, and sends my anxiety through the roof but it’s worth it. But these are all fun things, the risk/ benefit scales tip towards the benefit due to fun. Massive operation, not so much. But we knew it was something that long term would be worth doing. 

On Thursday while Nate was in his incredibly long surgery- due to his mangled right hip, I had far too much time to think, I mean agonise, over whether having the surgery was the right decision. Luckily Michael and I have always been on the same page about Nate and what he needs, as disagreeing on this would have put a whole other dimension to the decision game. We kissed Nate at 10am as he went to sleep and didn’t get to see him again until after 9pm in PICU. We managed to escape PICU last night and are now on a ward but Nate keeps spiking temperatures and his infection markers are up so treating with antibiotics. He hasn’t such a big op before, and it’s difficult to know what is just him recovering and healing, and what’s problematic. As a result the pain management plan of epidural is scuppered as it needs to come out. So we now we have a new set of issues as morphine and derivatives will throw off his breathing, and NSAIDs cause stomach bleeds. It’s strange having a conversation about drugs and whether he’s had different ones before then realising that actually Nate has been pretty stable on his meds for a long time, and has been well managed. Oh also we picked up the strangest compliment- that there’s not a mark in his skin ( i.e. pressure marks) 

With the temperature spike in the night came the most random thing. The Dr who came to take his bloods was a bit excited to see Nate having previously worked in a lab with Prof. Gibbons in Oxford studying the ATRX gene! This was the first time since becoming a Dr she had met anyone with the condition! Absolutely bonkers. She was asking about numbers in the country and had we met anyone else etc. She went off to fire Prof. Gibbons an email! More info on ATRX gene research below. 

https://www.rdm.ox.ac.uk/people/richard-gibbons

So the plan for the weekend is to push through, try drugs, manage the pain, and treat the infection. 

 

Forgotten again

Aha! 

For those of you who remain unaware, I have some good news- COVID is leaving on precisely 24th February. How kind of it to finally fuck off. Except it hasn’t. We must now live with it. Apart from the people who probably won’t be able to live with it, and might actually die from it that is. But nobody cares about them do they. We must regain our ableist normalcy mustn’t we. Anything to hide the piss ups from the plebs. The piss ups “real people” don’t care about. Except we do. Especially the real people who had no visitors in hospital or were unable to be visitors. Those dying alone and their families and friends. The funerals and the people unable to say goodbye. Real people who stayed home, and those who worked throughout the pandemic. The people who shielded. The mothers with babies and no support. The carers trying to keep those they care for safe. These real people are extremely fucked off by the whole thing actually. 

But it’s a pretty impressive management technique isn’t it - distracting us with an announcement that will thrill a large portion of the general public for varied reasons, and infuriate the rest. Meaning everyone has an opinion on “it” making “it” all anyone wants to talk about. We aren’t even being managed with subtlety. 

I can’t help but admire (in a perverse way- like how you might be impressed by the ability of a wolf pack to take down their prey) the utter fucking gall of our leaders making covid isolation requirements no longer law. I’ve seen this decision described as brave or stupid. Brave or stupid actions that may have an effect on the average person, but are a colossal slap in the face for those who were clinically extremely vulnerable. And let’s not forget the CEV children who shielded and STILL REMAIN UNVACCINATED. The vaccine promised before Christmas is yet to materialise for the majority of this cohort. And for those who are lucky enough to have received a vaccination before the 24th Feb they won’t have had time to be fully vaccinated. 

Every time I read or hear about “catch ups” or “levelling up” all I can think of is the pervasive attitude that some children and adults matter more than others. 

I would be far happier for things to go back to “normal” if it was a new more considerate normal.

Yes maybe it is time to lift some restrictions, but put systems in place to continue to protect those who are still vulnerable. 

They fucking matter too. 

Last week’s dynamic risk assessment ( the one that is a “working document” in my head) said that Nate was at low risk of catching COVID watching his sister perform in High School Musical in a packed theatre. This was because he spent the previous week at home with her while she had COVID ( and didn’t catch it). This was his first time out out in 2 years. Fuck sake that’s shit for him. I mean he could die at any time from a horrific stoppy breathy thing and we have been hiding from COVID in the house. I was prepared to start going out and about but then fucking Boris throws a spanner in the works with his “go forth and infect” statement.

I feel like I’ve had to chase everything throughout this pandemic- information about shielding, should Nate go back to school, and now chasing a bloody vaccination loads of people are refusing! The last 2 years are a blur. I’m not entirely sure how we got through shielding and lockdowns and not seeing people. But what I am sure of is that I had no illegal parties or work functions. 

Gah. 

Carers week

So it’s carers week and if I see one more social media post on twitter from a politician thanking us I may punch a wall. Equally annoying are comments/ quotes like these:

“ I think what you do is amazing” “I couldn’t do what you do” 

We are normal people ( well fairly normal in my case). We do it because we love those we care for. We aren’t all lovely and naturally nurturing. More often than not we are “assertive” and “difficult”.

“God never gives you more than you can handle”

Bollocks. I passed the “more than you can handle” stage about 4 years ago. Hmm is there anyone I haven’t cried at? 

“God only gives special children to special people”

Fuck off. Half the time I’m an absolute twat- which my husband can attest to. 

Seriously I get the comments, I understand the positivity in the intent behind them but it’s not helpful. It perpetuates the superhero carer identity myth and although I could quite fancy a cape or anything that brings me closer to Captain America ( I’m looking at you Chris *wink*) attitudes like these throughout society can be harmful. They suggest we can always deal with whatever is thrown our way, putting unintentional pressure on us to just keep on going. It also cleverly takes the onus away from the budget holders who could make a difference to carers by providing the right sort of support such as respite and paid carers. If carers are so amazing and wonderful and oh wow etc surely they don’t need help...

Boris says we are “inspirational”. Well Boris can fuck right off. 

The stark reality is that “non working” carers or those earning below £128 per week are given £67.60 per week in carers allowance for proving often 24 hr care. It’s not a lot. These are people who struggle to fit in work due to their caring commitments. The person you care for always comes first. Meetings, reviews, appointments, deliveries and assessments are time consuming and the assumption is always that you are available. And that’s if they are well. Frequent or prolonged hospital stays put another wrinkle in the working plan, and why I myself gave up working back in 2012.  If life becomes (more) difficult as a carer professionals may be quick to suggest you work less or actually give up work to make things “easier” on yourself. For some of us this isn’t an option for financial reasons. For others working is a break from caring, and provides the human contact that can be missing from our lives, caring can be incredibly lonely. Also why the very fuck should we give up working? All ( ALL!!!) we need is flexibility and better access to services and support.

With carers nationwide already donkeys on the proverbial edge COVID came along and took an already tenuous support system and fucked it over. “Due to COVID” is a most excellent all encompassing get out to explain away delays in so many things.

The general population have struggled with lockdowns and isolation away from their support networks. These feelings are multiplied for carers shielding relatives and friends due to their vulnerability. It’s been terrifying. 

Returning to my point about social media. It’s not enough to post your praise and respect for carers. We are stressed, medicated, and broken. 

So what can you do to help? You can support us by supporting the people we care for. Make their lives better.

Broaden your knowledge of disabilities including hidden disabilities. 

Be mindful in making your businesses and services more accessible. If morals and ethics aren’t your thing think of the profits. People with disabilities and carers spend money too. You will reap the benefits as good reviews spread like wildfire in the SN and disabled communities.

Be a friendly ear. 

Object to cuts in budgets around health and social care. Push for recognition of paid carers too who do a highly skilled brilliant job for crappy pay. Support an increase in carers allowance. 

Think about your friends who are carers when making plans. Sometimes with a bit more notice we can attend events and happenings. Coming to us can make things so much easier too. 

If you are a health or social care professional recognise that carers can be unsure about what to do. Our decisions ultimately are huge, especially for those of us caring for people who can’t advocate for themselves. We are terrified about making the wrong decision. We second guess ourselves constantly. You will likely get a different opinion from us on different days. We may change our minds. We may be tired and sometimes a bit of an arse. We may be uncontactable and then struggle to call you back. We may forget things- believe me we have more than a few things to remember. We have so many appointments that we can’t be sure what we’ve already told you. We get confused about who’s done or said what to who, and what we said we would do. Meetings can often feel like an exam I haven’t studied for. And unlike my finals I can’t get up and leave half way through to go to the Students Union for a pint...

That’s about it really. 

A word fart blog post and now this “amazing inspirational wonderful brave noble and selfless” human is off to bed, hoping to wake up valued visible and supported.

10 years of SWAN UK- Undiagnosed Children’s Day 2021

For those of you who don’t know SWAN stands for “Syndromes Without A Name”. A community of us, the “outsiders”, living with family members who have an unknown genetic condition. But what is this madness you may well ask, how can people not have a diagnosis? Well truthfully for many families their children present with combinations of symptoms/ clinical diagnoses never seen before. Or they differ to those usually seen. Health professionals need to have an idea about what to test for. 

Nate is almost 11. When he was born we were devastated to hear Drs thought he had a genetic condition, and that it was likely so severe he wouldn’t live very long. We were then a bit confused and frustrated at their admission they didn’t know which condition Nate had. No smart phone around in 2010 and I hung out of the maternity ward windows trying to get signal on my phone to Google genetic stuff or any syndrome even mentioned in passing. On every ward round Drs had noticed something else unusual about my son. We seemed to be playing dysmorphic feature bingo. Which was more than a bit shit. 

The genetics part of my degree certainly didn’t cover this sort of utter bollocks  ( or maybe it did and I was too hungover...). 

The real “lowlight” of those early days was meeting a geneticist and watching them hmmming while inspecting my little baby boy, photographing his “flaws” for discussion with colleagues in an attempt to diagnose him. The relationship did not recover from this initial meeting, which will surprise no one. 

We gathered equipment over that first year and eventually I bonded online with another Mam over the fact our children stop breathing and turn blue, and neither had a diagnosis. Emma, mate, I love you forever. Eventually we discovered that a charity had received funding to begin supporting families of children without a diagnosis. SWAN UK was live online. I think we began as a close knit group of 12 which grew slowly for the first few years before expanding exponentially. For those first years, while the group was small, I would say we knew the ins and outs of every bit of each other’s lives. We despaired at our treatment by professionals, at fob offs and condescension. We supported each other through tragic times. We smiled and laughed with dark humour to keep on swimming. We kept each other going. Or that’s what you all did for me anyway. As SWAN gained momentum the online community grew bigger, and the support provide expanded. We met up with our “swans” at local mini events, and then at larger group ones too. Our children played, the siblings ran wild comfortable with each other. The SWAN mams went through years of legendary 6monthly piss ups in cities around the country ( those were unofficial SWAN meets of course).These women are friends for life. They get it. No one else can truly understand the emotional rollercoaster of living with the unknown. Or that feeling when the geneticist asks if you and your partner are related...

Naturally over time we have drifted apart, our lives are really busy, many of us work, complications increase as our swans or swan graduates get older, and devastatingly many of these beautiful children have passed away.

But I know if I needed them these ladies would be there for me like a shot.

 

SWAN, headed by the wonderful Lauren provided us with a platform to have a say, and to be able to help implement real positive change for the undiagnosed and rare community. I’m not a massive fan of awareness days usually but raising awareness that a HUGE number of children and adults live their lives or part of their lives without a diagnosis is incredibly important. Getting a diagnosis is important but so is ensuring that those working with undiagnosed people know how to do so in a productive joined up way. Not having a diagnosis should NOT hinder getting the care, treatment, or equipment you need. I remember an OT being reluctant to adapt things in our house because Nate might “get better”. Fucksake. 

Ah and the endless questions from everyone from some random woman at a bus stop to a nurse in hospital:

“What’s wrong with him?” 

“What’s his diagnosis?”

“What’s he got?” 

“Can they fix him?”

“Did you know?”

“Can they test for it?”

Now what I always wanted to reply with was “fuck off” but apparently that’s frowned upon. Mind “UM, we don’t know” doesn’t go down much better and is met with incredulous looks. 

Over the years our family has been supported massively by SWAN and while I wasn't working being involved gave me purpose. I’ve acted as a local SWAN rep, I’ve spoken on committees and at events, I’ve written articles and even recorded a session for Radio 4’s the The Listening Project. I’ve had the privilege to meet the most amazing families, and I’ve been listened to. Nate did receive a very rare diagnosis and so we are technically “swan graduates”. Nate is rare even within that small group of boys and men, although the community is fantastic and a wealth of knowledge and experience. This means I rarely dip back into SWAN. The families there are where we were many years ago, and our needs have changed with time. 

I will never ever be able to thank Lauren and the team at SWAN UK enough for their help and support over the years. 

Happy 10th birthday SWAN UK!

https://www.undiagnosed.org.uk/

Also ladies (and you know who you are) we absolutely need a meet :) 

Nate’s feeding journey - original post Jan 2018

Shall I say it? Dare I?  

Nate’s stomach is currently feeling the best it has in years. 

Now this may quite likely be a “good patch” but could it be that after years of pain and frustration we are finally managing, or possibly even treating Nate’s gastro symptoms? *gasp*

Nate’s feeding saga is a long one. Honestly don’t bother reading this unless you have a particular interest in tubies, tubes, or have a child with ATRX. It’s not going to even try to be amusing, sorry. This is more of a brain fart. A garbled attempt to write it all down. So much has happened over the last 8 years that I get confused about timescales and chronological order so there will probably be some inaccuracies. I’ll need to edit, and then edit again as I remember bits and pieces. 

For a long time respiratory problems were Nate’s most pressing concern so although I suspect gut issues were always there, they weren’t the priority in the early days/ years- keeping Nate breathing was. 

At birth Nate didn’t do much at all really. His breathing was utterly rubbish, he couldn’t latch on to breast feed, and he had poor coordination of his suck and swallow when trying to take a bottle. A nasogastric tube was inserted and he needed oxygen via nasal cannula. That’s how we brought him home. Not knowing how long he would live for, or what condition he had, just that it would be something life limiting. We spent months giving formula with gaviscon through his NG tube (no feed pump and a thick consistency meant aching arms) after first trying to get him to take a bottle.  The NG would come out when Nate was doing well but there was a very specific technique required to feed Nate and an awful lot of air swallowing went on. We had variable success with bottle feeding, and Nate only fed from the cheapest brown teated bottles you could find. Nate would feed fine one day and not the next. He would spent a few weeks at home, then a few weeks in hospital, then slightly longer at home, followed by a further admission. All due to respiratory problems. All requiring huge amounts of oxygen and some finger crossing. While at home we attempted to wean Nate on to baby food and puréed meals but each time he was admitted into hospital with a respiratory problem the NG would inevitably go back down. 

As Nate approached his second birthday we made a determined effort to wean Nate from the permanent oxygen he still required during the day. Carrying a CD oxygen cylinder on my back while carrying Nate is definitely on my list of tricky things to do. To ditch the oxygen Nate was required to gain weight consistently and for this to happen the NG tube had to stay. Oxygen weaning was a success and Nate managed to discard the daytime oxygen and continued to persevere with oral feeding. I would spend hours trying to get Nate to finish a meal but he still couldn’t manage to move much food to the back of his mouth and then swallow it. He refused to eat in front of our SaLT, and the video fluoroscopy showed he had a safe but late swallow. Nate continued with his intermittent hospital admissions but began to spend longer at home. Nate displayed some pain during this period but it seemed to have a specific reason for example a urine infection or constipation. 

This inconsistent feeding continued and Nate struggled to maintain any weight he had gained. His doctors seemed quite happy for him to keep a NG tube for top ups and for us to continue to peresevere with oral feeding. I felt we were making little progress, it was like banging my head against a brick wall. Hours and hours were taken up and Nate got to do very little except what felt like force feeding, and if anything Nate was coughing more and more with the NG in situ ( so would you with a plastic tube at the back of your throat). At one point I was reinserting the NG 4-5 times a day as he hated it so much and would pull it out. Nate’s constipation was horrendous causing him to scream for days and he would also vomit large amounts. He had strange episodes with marked colour changes which coincided with oral feeding, and would scream in pain without any clear reason. We began to ask about more permanent solutions to feeding and giving meds. Eventually the drs listened and after a failed PEG ( percutaneous endoscopic gastrostomy) insertion as Nate’s stomach was in the wrong place ( which did explain why the air he swallowed had such a dramatic affect on his breathing) and he had a gastrostomy placed laparoscopicly just before his 3rd birthday. It’s shouldn’t be any surprise after reading the above to find that Nate’s chesty problems diminished once oral feeding was reduced... 

Initially Nate had a long Monarch gastrostomy tube. It wasn’t fixed in place (as most gastrostomy tubes are) by a ballon or disk as the plan was to swop it for a gastrostomy button as soon as possible ( once the stoma had healed).  Unfortunately I accidentally trapped said gtube in Nate’s pushchair when lifting him and so brought forward the insertion of a gastrostomy button by a month or so...

 #epicparentingfail

The resulting gastrostomy button was neat and tidy, and easy to replace if it broke or blocked and I was happy to change Nate’s. 

Nate continued with formula feeds with some small amounts of food eaten orally on occasion, however one negative effect of the gastrostomy was an increase in his reflux. He was sick more and more and travelling anywhere in the car was a nightmare. He would have better spells where he was less vomity but we couldn’t work out why. Absolutely demented with the amount of vomit regardless of which feed we used I decided to try Nate with real food through his gastrostomy. At this point we had just received Nate’s diagnosis of ATRX syndrome ( aged 3 1/2) and with aspiration pneumonia being one of the most common causes of death within affected individuals we were understandably committed to finding a solution. 

At that time using a blended diet (BD) wasn’t well supported or even approved of really but we went ahead with it. I’m perfectly capable of identifying and minimising risks, and the possible benefits certainly outweighed any. I will confess I fell into the trap of massively overthinking the change over to BD. I agonised over calories and balancing out his diet. I stressed about how to wean off formula and introduce food but the more I thought about it the more it made sense. So after playing around with BD and formula for a few weeks we went straight over to 3 meals a day. The results were overwhelmingly positive. Nate’s reflux settled and he gained weight. The constipation vanished and he had a good year or so. We were still seeing pain and vomiting although these episodes were separated by long episodes of, well, being ok. My thoughts are that these episodes had always been there to some degree but were masked by reflux and intolerance to formula feeds. 

After a referral to gastro they recommended a low FODMAPS diet which made little difference to Nate’s symptoms and led to a large weight loss. Intolerance tests came back negative and an endoscopy showed his reflux was well managed so neither were the issue. Nate was passed on to another gastroenterologist as his episodes of pain and vomiting seemed to be of a cyclical nature and were worsening. He would scream inconsolably for 3 or 4 days followed by being unable to move anything along his gut. Food would sit in his stomach as he filled with gas and would need frequent venting of his gtube -  -without this Nate would be sick. There would be a struggle to manage symptoms for a week or more and then all of a sudden problems would stop and things would go back to normal. This cycle was usually monthly but it began to change, happening much more frequently and Nate would only have a week or so where he was comfortable before the whole thing would start again. 

Two years ago Nate has a trans gastric jejunostomy button  inserted through his existing gastrostomy site. The plan was to stop feeds to his stomach during these episodes of pain and where Nate didn’t tolerate his food. We were to use the jejunostomy port for feed or dioralyte and have a top up jej feed at night when well. Using the jej for feed allowed the gastro port to be on free drainage which would help drain gas and sicky stomach secretions. Yes it’s as lovely as it sounds. This gave us a means to manage Nate at home and not worry about dehydration or weight loss, however extreme pain was still an issue and he ended up with a oramorph prescription.  Gastroparesis, abdominal migraine and cyclical vomiting were all possible causes for the symptoms Nate had been displaying for years but as there is so much overlap between these conditions it’s hard to know which is the actual culprit.  

Over that first year with the GJ Nate spent more time on a continuous jej feed than off it and his weight plateaued. Continuous feeds are quite restrictive and my son likes to play with his tubes, tangling and detaching, covering himself in milk. My ideal scenario is having Nate on a jej feed for the shortest time possible. His doctors didn’t want to try certain drugs as they interacted with already established meds and although an antisickness med was introduced they held back on the harder stuff. The general feeling was that Nate’s gut was deteriorating and that he would probably need to be kept on a jej feed at all times, although at his worst even jej feeds weren’t tolerated, and an eventual need for TPN was a possibility. This concerned me greatly. We were incredibly frustrated at the lack of creative thinking by health and at one point Nate was referred to a palliative care team at another hospital in a bid to manage his “difficult symptoms”.  I ended up attending an appointment and suggesting antibiotics and going dairy and gluten free ( even though he didn’t have a proven intolerance or allergy) in an attempt to change something. To try something. Nate was miserable, as were we. 

Things got a little bit better with the metronidazole and  change in diet- he had a better “patch”.  Not great, but more manageable. We then had a spell where Nate would aspirate an impressive amount of blood from his stomach. Sometimes dark brown sometimes bright red. Gastro weren’t particularly helpful, and during this time we didn’t have a named gastroenterologist managing Nate. Alongside these issues Nate was having odd tonic not breathing episodes and his usual breathing problems. Also in the never ending crap-fest that is his syndrome were manic episodes where he would go without sleep for days, jerk about and sweat profusely while being awake but glassy eyed and unresponsive to us. These problems were getting worse and Nate’s neuro prescribed Risperidone to see if it would help. At the time he stated that another potential benefit which had been noted anecdotally was that this drug could have a positive impact on Nate’s gastro issues...

AND IT HAS!!!!! 

It’s been three months now since the last gastro episode ( not including a stomach bug).

 *edit 13/06/18 - 5 months no gastro episode* 

*edit 13/02/20 - a couple of very minor blips but no major episodes*

So that’s where we are at the minute. Two blended meals during the day and a jej top up at night. I even had a conversation with Nate’s dietician a few weeks ago about dropping the overnight feed and reintroducing breakfast. I suspect Nate’s cyclical issues are still there simmering under the surface, he will have an odd cry out at times, but they are clearly not what they were. I am conscious that this may be a simply a ridiculously good good patch. But fuck it we will take whatever we can get. 

( Red mark on Nate’s forehead is from his overnight mask he hasn't bashed himself) 

 

BIG NEWS!

**Edit 20.8.20 Nate has had his trans gastric jejunostomy removed and now has a spangly new gastrostomy button** 

AMAZING!!!!

It’s relatively unheard of to move back to a gastrostomy button from a GJ as in general gastro issues are progressive. This may just be a good spell, but we are rolling with it, especially considering his tonic episodes are shocking at the minute.  Nate’s GJ has been on its way out for a while- the white disk kept falling out and the gastro port wasn't draining easily. Then the balloon burst which holds it in place. The agreement with gastro was that should it totally break the community nurses could remove it and put a standard gastrostomy button in. They came this morning but were unable to pull it out. After much pulling I was instructed to take Nate to A and E so that it could be removed in a safe environment in case anything went wrong. After waiting an hour in our local hospital’s A and E I was told I had come to the wrong one 🤦🏼‍♀️ and had to go to the other hospital that deals with Nate’s care. Suffice it to say I was not best pleased. At our other hospital a lovely young nurse lubed the tube and it came straight out with no pulling at all. 

So to quote Orlando Jones in the 00s film Evolution, 

 “There’s always time for lubricant”

Happy new year! I think?

So it appears that we are still in this COVID mess and locked down yet again. At least I think we are, it’s hard to tell when it’s still so busy in “the outside”. But that’s ok because it’s all going REALLY WELL. I mean yeah over a thousand deaths a day sounds pretty bad, and our NHS is overwhelmed but the government is on it. Right on it. Right there making the hard decisions in a timely manner, apart from when they're not, which is most of the time. 

So what’s been happening with us? Well after a long period where Nate was having a multitude of tonic events at night which were becoming increasingly difficult to deal with, he was started on clobazam.  We persevered as we increased the dose but it just zonked him out to be honest. It didn’t seem to have much effect ( if any) on the "no air entry" events while sleeping and so we weaned him off in November. It was once weaned that a really good run began. And I mean REALLY good. He wasn't even having the typical apnoeas he's had since he was a baby. Although he did begin to have seizures during the day, but he does breathe during those ones so, you know, cling to the positives. This combined with the fact everyone he comes into contact with is masked has resulted in the healthiest Natie he’s ever been at Christmas. So while it was the oddest Christmas we’ve had ( chilly garden visits) it wasn’t as horrendous as it could have been. 

I’ve realised I don’t think I’ve shown Nate’s new room. It’s Avengers themed! He particular loves his funky lights. All done by Michael and his dad. There was some assistance by Thea, but judging by the yelling I suspect this was minimal. The final addition completing Nate's room is H track hoisting which is going in as I type. 

And now? Well not much has changed. We’ve cancelled all face to face appointments but as a family we are still going to work and school ( see http://theaandnatesmam.blogspot.com/2020/07/end-of-summer-term-at-least-i-think-it.html?m=1 which covers why we made that decision).

My daughter is very happy to be in her school building with a few friends doing online learning, and her brother is benefiting from his usual access to therapy and resources which he missed out on March- July. As a family with reduced access to the big outside world this isn’t very different to how we’ve lived for many years. Especially with no respite. With Nate, his equipment, and his variable health, we’ve always had to think very carefully before venturing out and about, and more often than not stayed home. We did a carers assessment the other week which was really fucking depressing. Michael naffed off on a “work call” half way through which was suspiciously convenient. We both realised that without a shit load of planning we don’t get to do much at all as a couple, or with our daughter. And even then it’s unlikely to be able to be arranged. We had to call in a lot of favours just to be able to attend family funerals. How wrong is that. So yeah, lockdown, not that different for us. Although I would murder a pint. 

The longer this situation goes on the more everyones mental health suffers. I’m feeling it in particular at the minute as I don’t think I was exactly top notch pre COVID. Throw a global pandemic at us carers and watch the slow build of anxiety and depression as we absorb the national situation with fun additional worries such as how long will an ambulance take if we need one? I tried to explain all of this to the GP I spoke to last week and I don’t think she grasped the utter shittiness of the carer situation. Can you request to have “donkey on the edge” written on your notes? It would give them a bit a prior warning of what to expect. I think I confused her with my nervous laugh while trying to explain that Nate's good run of 8 weeks of no bloody scary night time events just means I am waiting for something pretty spectacular to occur, and not in a good way. Needless to say the good run is over and I’m now feeling less anxious. Which probably doesn’t make a great deal of sense to anyone but me...

I truly wouldn’t like to unpick what’s going on inside my head. 

After months and months of utter fury at the TV and social media. At those "governing” us, the maskless wankers, the anti vaxxers, and the COVID data deniers, I had started to feel like the end of this whole fucking shit show was in sight but then you throw the inevitable new virus variants into the mix. Let's hope we get vaccinated before the virus mutates in a way which means the vaccine needs a tweak. Nate doesn’t qualify for a jab as he is only 10, but I did see good news in that parent carers are now in group 6 for the vaccine so we should get it fairly soon (or at some point anyway). I’m now less worried about the kids becoming infected and more concerned about who the very fuck will look after Nate if me and Michael are ill at the same time. Catastrophe. I suppose they would have to admit him to a paeds ward. Not that this has been discussed. But no one would know what to do with him. There’s been no discussion or planning. I feel like I need a plan.

Why haven’t I got a plan? 

FUCKSAKE

Yes a ward could deal with the big issues when they arose but they wouldn’t have a clue about all of those smaller signs we spot or routines we do to keep him safe. Fuck. I mean to some extent we’ve always lived like this. Parent carers aren’t allowed to get ill, especially not seriously. We do not have the time for it and I say this only half in jest. 

Thea is having her first lateral flow test at school today. That will be a delight for those involved I'm sure. Good luck to them.. I've no idea how testing will work in large school settings, and I expect in many it simply won't. I volunteered to help out with them at my workplace but there aren't many schools with the space, staffing and nursing to ensure they are done well. In an ideal world I don't think COVID testing should be added to the already long list of school staff tasks by this inept government. A government who are so far detached from the reality of schooling that they may as well of tasked us with wrangling sheep when they deposited thousands of testing kits on the first day of term. But anything that gives us back a little bit of control, and some reassurance despite its inaccuracies, is worth taking part in in some capacity. 

I am continuously shocked by how many people are still not listening to guidance. I know everyone is fed up but we still need to do our bit and make sensible choices to keep everyone safe. I don't give a shit if you think COVID won't make you ill- its making others ill, hospitals are struggling - good luck getting that ICU bed when you have an accident.

If you are of the opinion "nothing's going to stop me seeing by family and friends" stop being an absolute weapon, and you know what- never has that little bit of slang been so appropriate. You can infect others, do you want deaths on your conscience? Even selfish dickheads care about their relatives...surely?

You don't want to be vaccinated? That's your choice but stop sharing utter wanky lies you've seen on social media. How about a fact check. 

Anyway here's a Fred pic to end on a happier note. 

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.