Since we’ve been home we haven’t really left the flat. Not really. Small walks around the park, trips to the tiny corner supermarket.

Mostly we’ve hunkered in, part of it was trying to find our routine and a sense of normality. Trying to reclaim a sense of us after two months in hospital and hospice.

Part of it is fear. I’m very very aware of what it’s like to be outside the safety of the hospice. The looks at Kai’s NG tube and the look away, with side eyes after (just look for goodness sake. Acknowledge him and all his tubey glory. Look and smile like you would any other baby with ridiculously chubby cheeks).

There are a kajillion Mums and babies out during the day. Mostly I smile and my gaze kind of washes over them, I don’t look too closely. I don’t want to compare my baby with theirs, I don’t want to investigate how my little guy is doing developmentally. I know he’s behind. I know he’s not holding up his head or putting his fingers in his mouth, but what he is doing is more than enough. I’m so attuned to Kai as he is, I’m scared to know what typical development looks like.

It’s the fear, I know. We’ve spent so long dealing with the intellectual side of Kai’s disorder, and getting on with everything that we haven’t really dealt with the emotional side. To be honest, we went into hospice on end of life care, so that we managed to make it home again was joyous enough. I didn’t know this was a thing I needed to deal with. Not until small typically developing babies were everywhere.

In the end it happened at the pub. Our very first pub lunch with Kai and Sam’s folks. Friends of ours from NCT stopped to say hey, and how pleased they were to see us out of hospice. I was so so glad to see them, but was completely unprepared for how my emotions dropped out when I greeted their gorgeous little girl. She’s beautiful, hey. The most beautiful amazing little child you ever did see.

The difference developmentally between her and Kai was like night and day. She was born a week before Kai and oh my days. She’s so present and alert. Able to focus and hold a gaze, to recognise a face and smile in response, so social. Her movements smooth, and arms crossing her midline in delight.

I smiled and held it together, because grief is a private thing and I try not to process in public. Besides, despite the emotional turmoil that I was experiencing knowing just how developmentally delayed my guy is, she truly was beautiful and amazing. I was so pleased for our NCT friends (and I say that genuinely). They seemed well, and happy.

We said our goodbyes, and it wasn’t until Kai needed a nappy change that I cried it out in the privacy of the bathroom.

Every day I grieve the alternative to NKH. Everyday  I grieve what it might have been like, the future Kai might have had, the future our family might have had. I love Kai and Sam more than anything, and it’s hard to let go of the what ifs. The alternate reality without NKH.

I often remind myself that one what if was that Kai could have died and we’re so lucky to have him with us. But still, I would be remiss if I didn’t acknowledge the extreme sadness I have that we don’t walk the typical path. I think this is something all special needs parents go through, right? This is the still longing for Italy, when you’re bang smack in the middle of Holland. I mean, Holland is nice and all but it’s not Italy. No offence, Holland.

Sigh. I do my best to acknowledge the craziness of this whole situation, and then we move forward. Nappy, feed, meds. Another day down. We’ll get through.

Some days I’m okay. On some days I feel like I have things under control – Kai’s clean and in a dry nappy, the washing is happening and the sterilising is done and Kai’s feeds and meds are happening when they need to. I’ve showered and eaten and brushed my teeth, and the flat looks somewhat normal. On those days, I feel capable. More often are the days I feel like I’m barely holding it together with sellotape. On those days if Kai is fed, had his meds and his nappy is not too stinky, I’ll hold fort until Sam (thankfully!) gets home. I feel like I’m juggling all the things, and just barely making it work.

It’s so easy to miss things, to drop one of the balls and mess up. Like I did with Kai’s phenobarb dose.

We give Kai’s medication through the tube in syringes, so everything is measured out in mls. Because everything is at different strengths, the scripts are written in mgs, and we work out the mls from the strength. As an example, Kai takes Sodium Benzoate. The script says 500mg/kg/day which we split into four. Kai’s working weight is 6.88kg, so the total for the day is 3440mg, which split into four is 860mg per dose. At a med strength of 500mg/5ml that works out to 8.6ml per dose, and that’s what we draw up in the syringe and give to Kai.

Fine for Sodium Benzoate,  but there is a lot of working out and thinking and rechecking that happens. And Kai’s on 9 different medications each day. So it’s not a small undertaking every time we get a dose change or a new stash from the pharmacy.

My fuck up happened with phenobarb. Phenobarbitone is an anti-epileptic. We’ve been trying to wean it since before we left hospice. It’s horrid, it makes Kai vomit and it’s just, blurgh. We’re trying to increase zonisamide (another anti epileptic) as we wean phenobarb. Phenobarb takes forever to come out of your system, and it takes forever to load up. (Note: forever = 3/4 days).

We’d been home not even a week and I was freaking out. After a particularly unsettled day – when I was checking my calculations I thought I was meant to be giving Kai 7ml, but had been drawing up only 2.1ml – that’s an extreme wean. What happens on an extreme wean? Seizures and vomiting – tick and tick. Poor Kai. I rang our hospice symptom team all in a panic, we went through all the doses and decided on a part way (3ml) doses to help ease the drop.

Here’s the thing though, seizures and vomiting can be caused by a trillion things.

So, while we were in hospice, the strength of the phenobarb was 15mg/5ml. Once home, we had a new bottle with a strength of 50mg/5ml. And for a hot moment, I’d mixed them. Two days after freaking out I sat down with the bottles and redid all the calculations. The bottle said 50mg. The 2.1ml dose was the correct one all along.

I felt like such a wally. Horrified that I could have made such a mistake that effects Kai’s care and well being so drastically. The guilt at my best not being good enough, the fear of hurting Kai and the anger at myself for messing up took a few days to dissipate. I know Kai’s med schedule the best. I know him the best. I still can’t believe I fucked it up, but there you go.

After talking to our symptom care nurse, we reduced the dose to a lower 2.4ml. She came and did a visit (and when she did, she looked at the bottle to make sure I’d worked it out correctly) and we restarted the weaning schedule.

The enormity of my responsibility for Kai feels overwhelming sometimes. Honestly, sometimes I wonder what it would be like to have a ‘typical’ baby. Walk in the park by comparison. But then I think again, about people I know and just how some of them would be completely rubbish at being special needs parents (not you, FYI. I don’t socialise those people anymore so probably not you) and I go back to ‘thank fuck he came to us’ – even despite my small mess ups, and despite bad days being held together with sellotape, we’ve got this. We’re capable. His best shot is with us. And then I feel much better.

So they say that bumblebee’s aren’t designed to fly, that their bodies are too heavy for their little wings – wings that aren’t meant to enable flight according to the rules of aerodynamics. And yet, they fly. They don’t know they’re not meant to fly, they just keep on keeping on.

Because of this, the NKH community has adopted the bumble bee as one of their own, a little reminder to keep on keeping on. Every NKH parent is told their babies aren’t meant to live, and yet they do. I talked before about how Kai could go either way: Kai doesn’t know his brain is broken, he doesn’t know that he’s got a little glycine problem messing about with his brain development. He doesn’t know that his disorder is terminal. 

Today one of our NKH kids passed away. A beautiful little four year old who deserves to be remembered. He deserved more time, more life. He deserved so much more than NKH allowed him.

This beautiful little guy is the first NKH kid to pass since Kai was born, and I won’t lie, I’m devastated. I didn’t know him personally. I don’t know his parents. I can’t even imagine their grief.

But I do know it could easily have been Kai, and one day I’m sure it will be. I’m so angry – I feel like the research is SO CLOSE. I feel like we just need to hold out, protect his brain as much as we can. That hope is on the horizon. 

When an NKH kids passes, one of the phrases we say use is ‘Fly high.’  It’s all so heartbreaking, and today I’m loving on Kai a bit more than usual.

And just like that, we’re home. We haven’t  been home since before Christmas. Sam put away the tree on one visit earlier in the year,  but we still have all these unopened gifts sitting in the lounge.

It felt weird to leave the hospice, we said our gbyes quickly, and when we were finally out of the building, we packed up the car so quick! As it’s as if we were afraid we were going to be called back.

Being at home… it feels so good and so odd. We don’t have a routine at home yet, and all the added pressures of things like cooking and shopping and remembering to take the rubbish down have me a bit off balance.

Still, I’ll take it – sleeping in a proper bed again is so so amazing. Wearing pjs all day and not worrying about what your hair looks like. The sense of privacy, no nurses sticking their heads in to see how we are! All the things we have! I’d forgotten how much stuff we just have. How much stuff Kai has (he’s outgrown almost all the clothes we have for him!)

It’s amazing how much we take for granted, but I’m truly grateful that after a month in hospital, a week in intensive care and another month in hospice on end of life care, Kai basically said fuck it and got well enough to come home. I love him.

One of the worries about being home is what happens when Kai pulls out the tube. We won’t have nurses in our living room, so we can’t just pad down the hall and have someone put another back in.

They asked if I’d want to learn how to put it in, and the truth is: no. No I don’t. When I have to hold Kai’s head still, and he’s screaming and there are a kajillion hands over his face putting tubes down his face I want to cry with him. I hate it, I positively absolutely loathe that this is a necessity.

Put in perspective, it’s not the worst tube. It’s not a cannula into a vein, or a vent to help him breathe. It’s a small little one, and by far not the worst tube.

That doesn’t mean I don’t hate it, because I do. I hate that it messes up his face, and that we need to mitten his hands to keep it in. I hate that when he screams you can see it running down the back of his throat. I hate that Kai clearly doesn’t like it, and wants it gone.

So when we’re putting a new tube in, I feel all the things. And I’m crooning platitudes and trying to comfort my child as I forcibly restrain his head and just… it’s rubbish.

Once we’re home we will have community nurses available to us during daylight hours, who can come out and put a tube down if we need.

At night? At night Sam stepped up and said he’d learn. To be fair though, he stuck a tube down his own nose at the prompting of a nurse the other day, so yeah.

He’s spent some time hanging out with Adam. Adam is the creepy child mannequin where you can learn all the things (NG, trachie, g-tube button among a dozen other things. Poor creepy Adam has it rough).

Still, Sam has been signed off by two nurses, and has been given the thumbs up to put an NG tube in for Kai if need be.

Honestly, I was so blissfully unaware of what special needs parents learn to do in The Before. I guess this is just one thing of many that we’ll learn to take care of.

We’re gearing up to go home. I’ve taken on the meds and bulk of the care. Kai sleeps with us now, instead of under the watchful eye of the nurses, which is nice. I feel a bit like I’m getting my baby ‘back’. The nurses pop their heads in to see if we’re fine, and if we are they leave us to it. It’s pretty refreshing, actually, to be the main carer for Kai, like I’m meant to be.

In saying that, it’s not a walk in the park and I’m grateful the nurses are close by if we need them. Kai’s horribly difficult to aspirate. Horribly horribl difficult. It’s frustrating for everyone, Kai especially. I hate it, trying to pull up something from his belly to make sure the ng is still in the right place. If he’s sleeping and we can’t get one, we reposition him or do mouth care, often waking him. He is not a fan of the NG either. He’s always trying to pull it out. The nurses say he’ll ‘get used to it’ but I suspect he’ll get used to it in the same way you would if you had a thorn in your ankle, and you didn’t know it wasn’t meant to hurt.

We have to mitten his hands to keep him from pulling the tube out if we’re not hovering over him. It’s so frustrating, and I worry we’re impeding his development, I’m pretty sure he’s meant to exploring things with his mouth, and would if he knew he could reach his mouth with his hands. He’s already showing signs of shoving his gloved fist into his mouth. 

I’m also anxious to get the referrals sorted. We’re waiting to see a gastric surgeon for a g-tube, so we won’t have put meds down his nose (instead we can put them directly into his belly). And we’re waiting to see a speech and language therapist about his suck. And a dietician. It’s taking forever to sort and is so frustrating. While I’m grateful for the NHS, it’s so slow moving.

Kai’s also having a hard time keeping meds down, especially the phenobarbitone and sodium benzoate, medication used to keep his seizures at bay and the glycine in his blood down. You know, just the important ones. We do a big song and dance around giving them. They must be diluted. They must be given on a full stomach. They must be given slowly (0.1ml/ten seconds. SB is 8.4ml, so takes a good quarter of an hour). Once in, we don’t move Kai, we don’t touch him, we love him with our voices. We make sure his nappy is fresh before we start so we don’t need to do it later. We stagger the meds too, some at the beginning, some mid feed, some at the end, just in case it s a volume issue. Sometimes it works, sometimes he vomits no matter what we do.

This whole medication tube business is rough. We do it, because there is no choice in the matter – Kai needs it. His brain needs it. So we do it, but the now is rough, and we’re not even home yet.

Still, worth it. For every single day we get with him. Worth it.

So it’s been a few days and the antibiotics aren’t doing their thing. The abscess hasn’t burst, but it does have some fluid. It’s hard around the outside and soft in the middle. On the hospice gps advice (they come visit us, it’s the most convenient gp visit ever), anyway, on the gps advice we went back to the local hospice hospital to see about helping it along.

Two things happened.

The first is that they whacked on some cream that numbs while it breaks down the skin, making it thinner and therefore more likely for the liquid underneath to burst through. That sounds horrific, and I worry that his poor skin is going to be so irritated and raw, even after the numbing has worn off.

The second is that if it hasn’t burst, because the local hospital won’t do anything surgical on children under 5, we have to go back into London to see a surgeon about cutting it. This could mean anything. I could mean a local, it could mean a general. It could mean a bit of numbing cream. We won’t know until we get there.

This of course freaks me out, because any major stressful event may cause seizures and coma. We only just got over the last lot, that came on from two monthly immunisations and a cold.

We’ve got our fingers crossed it bursts.

Update:

It didn’t burst. We went into London to our regular hospital but we were lucky – the day unit wasn’t busy and the surgical resident Dr Julie was available, she was so wonderfully nice to us. We talked about the best approach, which was to lance it and let it drain. So we went into the treatment room and did it, with some numbing spray.

Oh my days. It was disgusting,  but at the same time I couldn’t look away. The pus was a horrid green/brown mustard colour and gushed out. It was foul, I can’t believe that was in my babies leg! There was so much of it too, it was the most crazy thing, it just kept coming! Poor little baby.

In the end it was dressed, and we were given a script for antibiotics. We spent more time in the pharmacy than in the ward.

Still, very very glad it’s taken care of! 

In the Before, I wasn’t a superstitious person. I wasn’t a religious person, either. I can’t remember who it was that told me that largest percentage of middle class, comfortable people are atheists, mostly because their lives are so comfortable and they don’t often face hardship out of their control. If you’re not in a situation where something horrid is happening, something truly horrid, then you don’t need faith or superstition to get you through.

At hospice I’ve picked up a few superstitious habits, because there is so much with Kai that we can only face with hope and cuddles. If we don’t want something to happen, we don’t mention it for fear of jinxing it, having it come about. We talk around it. If he’s sleeping and settled, we won’t say something like ‘he’s keeping down his meds! Hopefully he’ll keep down the next lot’ because then for sure Kai will vomit.

When we do talk about things we’re hopeful about, we always always prefix or end it with ‘touch wood’. And then both Sam and I will touch the nearest bit of wood, hopefully unpainted. Some of the nurses do it too, which is where I suspect we got the habit from.

I also throw up small tiny prayers of hope when I’m faced with a junction where Kai could go either way. I’ve never prayed as much in my life as I have since Kai was been born. Honestly, there is a lot of prayer.

When you’re faced with such extreme love and against such extreme hardship and pain, with the possibility of extreme loss, I think that’s where faith and hope are the strongest.