The better that Kai is, the more expressive he is. The more chatty and vocal, the more awake and aware. Which means he’s also very quick to let you know if he’s unhappy, and sometimes – the lip comes out. Sam is always telling him to ‘put that lip away’ but honestly, it makes me laugh so hard when I see it.
Kai’s doing quite well. He’s needing o2 less and less and is becoming more chatty and active. It’s so nice to see him like this, and I’m tentatively easing into enjoying this time with him.
We’re trying more solids (more for sensory experience than nutrition) which I think Kai enjoys. We’re also trying to socialise a bit more while Kai is doing well. We’ve had more dinners and out for lunches and long walks. We even spent an afternoon in a beer garden with a friend. It was so delightful, sun, live music, good company, good food and a cheeky g&t. Kai was so well behaved and it just, it felt so easy. So normal.
Is this what it’s like for neuro-typical parents? It’s delightful. Cross your fingers that we get more time like this with our little guy.
Oh my days. Oh my days!! I’m just back from the most amazing fundraiser. The Fulham Brass Band often plays charity concerts and we were lucky to be a beneficiary, fundraising for Joseph’s Goal. We had so many people come. So many friends that I haven’t seen in forever. Friends who have since had babies, friends who visited us in Hospice, friends from overseas, NCT friends, friends who we met in NICU who are now (hurrah!!) home!
We’ve been in a bit of a bubble lately, being in hospital and what not. So to see so many of my favourites in one place was just… I felt so loved. That there were so many people on our team, it was amazing. So many faces, so many friends. I was (almost) gutted we were at a concert, instead of somewhere to hang out and chat.
Almost, though. It was an AMAZING concert. Turns out brass bands are well fun, and l super enjoyed the music. Some of it was shockingly familiar, and I was amazed at how much I recognised. But also, just how fun it was. I was genuinely delighted to be there.
About partway through I did a talk about Kai… I have no problem with public speaking. When I was at uni I did talks to thousands of school girls, trying to encourage women into science. Talking about science is pretty easy. Talking about your terminal ill baby was emotional. I cried, in front of a hall full of people. But I got the gist across, I think.
Then there were cakes at the interval – oh my days. So much cake. SO MUCH CAKE. It was well delicious. We raised over £900 between the cake sale and the retiring collection. I can’t even begin to explain how grateful we are, how much hope this gives us and how much momentum, spurring us on to the next fundraising event (come to dinner with us! Friday 23rd of June, it will be delicious)
To everyone who came, who reached out to say they couldn’t come, who donated in their absence, who ate cake or donated cakes for the bake sale… thank you. Thank you thank you thank you. You guys are truly amazing!
Brass Bands, hey? Love them. What a fab afternoon.
As we’ve been discharged (thank goodness for that, it’s such a relief to be home after that horror of a stay), we’ve been given an oxygen stash – several tanks. For kai’s comfort. We don’t have an o2 monitor (they run into the thousands, can you believe it?! I’m looking at a few different options, namely owlet and neebo) so it’s a bit tricky to tell when Kai needs it.
We look for the tracheal tug, or an intercostal pull. Nostril flareing, or a head bob. Anything that shows he’s working hard to breathe. We reposition him to help his airway, and if we’re even slightly concerned we pull out the tank.
Kai hates the nasal cannula. If you don’t occupy his hands he’ll have it off before you can even turn on the O2. I guess this is just another thing we manage. We have a whole pile of equipment: apnea monitors, suction machines and now o2 tanks. Add that to our mini pharmacy and emergency toolbox full of controlled drugs and IV gear, we’re essentially a more comfortable ward already.
Still, I guess this is just how we roll now.
As if this hospital stay couldn’t get worse. Today a paediatric matron I hadn’t met before tried to bully me into doing what she wanted me to, despite my very clear concerns. I’m not imagining the bullying either, hey. When it was clear I wasn’t going to budge she did two things, both which were so disrespectful I can’t even believe they happened.
First, she asked when Sam would be around, so she could ‘talk to someone with sense.’ Wtf. You can’t defer to a partner because you don’t get your way. I pretty much told her that line would do her no good. Sam supports the decisions I make with Kai when he can’t be there. I rely on this trust, and I told her so. There was absolutely no way she was putting a wedge between Sam and I.
Second, when it was clear I wasn’t budging while my concerns weren’t being met, she told me I was “irrational” and threatened to call social services. She then said she didn’t want to, but that I was “forcing her into it”, and it would mean “so much trouble” for me.
What. The. Fuck.
There is a power imbalance in hospitals. I’d go even further and say it exists in most medical situations. Medical health professionals are trusted, by us, with our health. They give advice and we’re expected to follow it. Generally we trust that they have a big fancy medical degree and lots of knowledge and experience we don’t have, and we trust that they’re doing their best by us.
Unfortunately for this nurse, when you’re faced with an incredibly rare disorder with a large medical team who don’t always know what’s going on, who doesn’t always have the full picture, you get pretty good at standing up for what you think is best, even when it’s contrary to what your medical team think.
I can’t even begin to tell you how many times Kai has been seizing, and our team have wanted to do one thing (adjust the seizure meds) and I’ve insisted on something else (adjusting the NKH meds, knowing full well it’s the NKH causing the seizures) and been right. I’ve had a six month crash course in Kai and NKH. I arrive at medical appointments well researched so we can get the most out of our time with our consultants. I know my stuff, and I have no problem sharing my thoughts with our medical team.
So when this matron expected me to roll over and I didn’t (despite three days of sleep deprivation and emotion because my baby is in hospital), she resorted to threats and bullying.
There is no place for threats or bullying in a hospital. There is no place for threats or bullying on a children’s ward. If you want to build trust, and have a parent trust you despite their concerns – threats are not the way to make that happen.
So, I held my own, ignored her solution and offered a part way compromise. She seemed completely oblivious as to how inappropriate and horrific her manner was. How a ‘at any cost’ kind of attitude is so detrimental to the relationship between me and her team. To the care and services Kai receives. As she swept out of Kai’s room it was with such a self satisfied smug air that the moment she was gone I burst into tears.
I never want to fight with Kai’s medical team – they’re meant to be our people. The ones who guide us through the hard times, who help us understand when no one else can. We’re meant to be on the same team, all concerned with what’s best for Kai. But that doesn’t mean I’m okay with being bullied. So I raged and cried at Sam. And then I wrote a complaint to the hospital. I slept on it, edited out the passive aggressive, overly emotional bits and sent it.
When our palliative care nurse came in with our community care nurse they were all very up and arms. Very defensive and quick to explain why I was in the wrong. I stopped the conversation short and said I’d already sent a complaint letter and I would hear no more on it. Worse is that now I don’t want to interact with Kai’s community team. Conveniently, for most things, I don’t have to. They missed the last neuro appointment (unheard of, as they’ve been at every appointment ever) so I’m guessing they’re not interested in interacting with us either. The amount of animosity is ridiculous.
I don’t think they understand that while this is their job, and sure it’s their day to day with all of this hardship – but this is our life. They get to go home after 6pm, and have weekends off. We don’t. We live it, day in day out. The three am wake ups and five am seizures.
You’d think there would be some sympathy, some kindness. I’ve never been more disappointed in Kai’s team as I am today.
Update:
After we were discharged, one of the matrons we met while we were in intensive care called. She was in charge of managing my complaint and was reaching out.
She’d had statements from the matron and our community nurse, both who had focused on their concerns and my compromise. Apparently they missed the part about threats and bullying, which is what my complaint was about.
Then, she did what should have been done in the first place. She apologised. Several times. She listened to what I had to say. She acknowledged what I said, and was sympathetic. She was kind. Overwhelmingly so. She acknowledged the situation, and the difficulty, and the bullying, said it was unnecessary and shouldn’t have happened. That there were better ways. And then she talked me through the next steps.
With one conversation, she eased so much of the tension. I’m still not in love with our community team, but I find comfort that someone at the hospital heard my concerns and it’s being raised as an issue. Maybe it’s something about intensive care nurses – they’re all so kind and sympathetic. I think back to our NICU stay and there are so many NICU nurses I’m fond of.
Either way, I feel better now that I’ve been heard. Hopefully no other parent will be put in the same situation I was.
Gaaaaaaaaaaaah. I’m so sleep deprived. I did the midnight meds, was woken every half hour till 4am when Kai’s o2 dipped before they gave oxygen and then awake at 6am for more meds.
Not the best state to be blindsided about end of life care directives for Kai.
Which is to say I was asked, in my super sleep deprived state, without Sam, to reconsider our end of life plan to include, in this instance, invasive ventilation if Kai needs it. That right there opens a whole can of worms. We spent so many hours and tears and hand wringing to agree on our end of life care directive. We talked about quality of death and quality of life. For us, for Kai. And Sam and I together agreed no ventilation. No vent, no c-pap.
If it’s stupid rhinovirus that is going to take Kai, and not NKH, do we still let him go? Or do we fight it with a vent, and hope it doesn’t do too much damage to Kai’s lungs ad bring it the end about later? When is the best time to say gbye? To even consider it? I hate that it’s a thing. I hate that we have an end of care directive at all. I hate that I’m being asked to think about end of life with a run of the mill every day *cold*.
It brings up a whole conversation about how much intervention is too much intervention. As an example: We could go home with an o2 monitor and oxygen. Kai will eventually need an o2 monitor and oxygen as his disorder deteriorates – NKH (or rather low tone) is not nice on lungs that have to work harder to compensate. But because this is not NKH related, we have to hang out at the hospital. On a ward where the bed could be used for someone else, and we could be more comfortable and more easily managed at home. O2… it’s just a little nasal cannula. He’s on it right now. Breathing a tiny tiny amount of air (0.5L – minuscule amounts!). And I wonder right now whether this is going a little bit too far with intervention – is it kinder to help? Or not help?
Is a little nasal cannula okay? With a small amount of oxygen? There are half a dozen steps from that to invasive ventilation, but where is the line? How do you know? I hate that we’re being asked this over a stupid cold. Because that’s all it is – Kai has a regular little cold and it’s horrific that our medical team just casually mention changing our carefully, painfully, with much tears end of life care directive it like it’s no big deal. Had a quick call with palliative, Elly. What do you think about a quick round of horrifically invasive ventilation if Kai needs it?
I felt completely blindsided. In my severely sleep deprived state I burst into tears and said I couldn’t have that conversation without Sam. I hate crying in front of the team. It changes the way they see you. I go from being medical expert in Kai to hysterical mother and suddenly the tone changes and they’re all gently gently. Condescending, talking at me rather than to me. Making decisions for me, and for Kai. It’s horrific.
How can they ever understand what it means to talk about the death of your child? To casually bring it up like it’s no big deal?
Sam and I spent hours and hours deliberating what end of life for Kai may look like for our little family. For quality of death, versus quality of life. I have cried countless tears, I have hugged Kai close when he’s well, and sobbed when he’s suffered. Every day I wonder if we’ve made the right choices. About the interventions we make daily. Every day I wonder whether we’re doing too much or too little. Whether the decisions we’ve made are the right ones for Kai.
For our community nurse to question our end of life decisions for Kai with such a blasé attitude, and in front of a room full of strangers? Devastating. I can’t believe she could have been so unthinking, so unsympathetic.
I hate being in hospital. I hate it.
Kai has Rhinovirus. Which is to say that Kai has a cold. Which I think would be completely fine in a Neuro typical child… in my little NKH baby it means a&e visits (two so far), an increase in nurse visits (three in the last two days) and a hospital stay. I have no idea where he caught it. We don’t have people over who have even the remotest sniffle. We avoid public transport, we’re rarely out in public.
But our doctor said it could have been anything. Rhinovirus is an airborne virus. Someone in our building could have coughed down our hallway, or passing someone as we crossed the road. Any innocuous little thing.
But for Kai, it means we’re back in hospital. I have not missed the hospital. Not even a little bit. Being away from Sam, the dingy rooms, attempting sleep on a horrid cross between a chair and a bench. Politely fighting with the nurses and doctors… I don’t have The Fear while we’re here. Kai isn’t having any seizures (thank goodness) and to be fair, apart from the occasional dip in his o2 stats and the added effort he’s working to breathe, he’s just got a cold.
However, the on duty GP, the peds reg, and a whole swath of nurses think ‘it would be best’ if we were in hospital ‘just in case’. Preventative just in case-ness because of all the maybes is huge. We’re in hospital, because maybe the Rhinovirus might get worse. Because maybe breathing this hard will tire Kai out too much. Kai is now on antibiotics because maybe, he might get a secondary chest infection (same as the last two non-existent chest infections Kai didn’t get. Possibly because of the antibiotics. Possibly because he never would have, who knows?). We’re in hospital because all the medical staff have The Fear.
This bothers me, because Kai’s quality of care is a kajillion times better at home, where all the maybes exist just the same and we’re a short blue light ambulance away if we need to be. I hate being here. I am sleep deprived, having to do all the meds without Sam around for respite, not sleeping because of the stats alarm freaking out when Kai kicks and the nurses who want to do obvs while Kai’s asleep (waking us both) on the hour every hour.
I hate being in hospital. It’s rubbish.
I wasn’t prepared to see how being parents to a special needs baby would change my relationship with Sam, not in the most fundamental way it has. I know that parenting a special needs baby is difficult. I know it adds stressors. And you know what? I’m actually pretty lucky – Sam helps with Kai. Sam manages his stress and fears and grief and helps – he’s the bread winner, he helps parent with Kai on the off hours, he’s the king of bath time. And despite the gender wars of the division of labour, I do feel extremely lucky to be with a guy who helps as much as Sam does. I know that not all special needs Dads respond like he does.
In saying that, I was completely unprepared for how little us time we’d get. When there’s a spare set of hands to mind Kai we take advantage of the time to get everything we need done. Life admin, whatever on our phones, computers, with our brains far away from the moment. All the things we still want to hold on to, but don’t have time for. Now that our lives are not our own, my spare time is competing with Sam’s spare time, which also competes with ‘us’ time.
We started co-existing, which just blows my mind. We were the tightest, strongest of couples. Now, under the stress of living with special needs and everything that goes with that, we’re a little further apart than I expected. Still strong, still tight and I still have all the feels, and when it counts Sam’s absolutely there. But I was unprepared for how the ongoing strain would change things for us. How easily we started sniping at each other, how the need to get things done with way less time pushed out all the usual relationship-y things we used to do.
We’re rearranging so we can make time for us (namely, we hopefully soon will have a nurse come by one evening a week so we can have a few hours together). The biggest help has been therapy, I think. We have a therapist come out to see us every two weeks, so we can talk through how we’re managing. It has the added bonus of ensuring we’re dealing with all the things instead of quietly leaving them till we’re at wits end. We didn’t intend for it to become a relationship tool (when your baby is on palliative care and you’re talking end of life plans your relationship pretty quickly becomes a non issue) but the more we’ve talked about how we’re managing all the special needs craziness, the more it’s exposed the tiny stressors in our relationship.
I’m grateful we have the place, and time and help to manage the tiny cracks, to stop them from becoming ginormous craters. I’m lucky that Sam is even open to therapy, as I know so many wouldn’t be. I’m grateful that we’re managing. Therapy feels more like general life maintenance, than as if we were on the cliff edge.
It’s funny the things that help. I also don’t think therapy deserves the stigma it has, but hey ho. I’m glad we’ve got access to a therapist, and I’m glad we’re managing all the things.
It makes a difference, you know?
We’re currently back in a good time. We’ve had a few seizure free days, and Kai has been very vocal, very awake and aware and quite content. Apart from the teeth that are coming through – we’re in a good time. I’m just going to take a moment and say woah buddy. The number of good periods we’ve had can be counted on one hand. So to be in one, it blows my mind a little.
However, the flipside with good times is that we haven’t had many of them, and I’m suspicious. See, I can manage the bad times. I know how to pull up my big girl pants and do whatever it is that we need to get Kai sorted. I’m good at the doing. I’m comfortable with managing the resources and talking to our medical team and organising our massive calendar of therapists.
This quietly waiting for the next dip, the next drama, the next thing… it’s tense. It makes it difficult to enjoy the good times, because I’m constantly watching out for something… anything. For a stretch that rolls into a seizure. For less awake time than usual. For pain grizzles instead of regular just because grizzles. I’m watching, and waiting, and I don’t trust for a moment that this good moment will be everlasting. NKH isn’t that kind to us.
In saying that, we’re really grateful for this little patch of stable and happy. Things seem more manageable and everyone is sleeping and suddenly all of the basics of life (showering! socialising! shopping! Visiting a cafe for a coffee! Taking long walks!) seem possible, even achievable. We don’t often get stable and happy, so I’m trying my best to soak it up and enjoy it.
Fingers crossed it lasts.
Baby gear these days is ridiculously adorable and fairly affordable. That’s such a dangerous combination – it’s difficult to resist ‘just popping in for a look’ as you go by H&M kids, or the baby section of M&S. Kai’s Grandma happened by some very very adorable hats, and before we knew it, Kai had the first of his hat collection.
Considering this amazing weather London’s been having, it’s a pretty well timed gift. We’re well pleased!
