#teammikaere

I can’t even explain how grateful I am to be home with Kai and Sam. In our own place, with our own stuff, with all of that beautiful privacy. This past weekend we went for walks, and cuddled on the couch for family movie night (super not age appropriate, we watched War Dogs) and on Sunday? Sunday I spent the entire day in my pjs with my boys. Delectable.

No nurses, no home visits, no drama. I can’t even begin to tell how beautiful this time is. Sam even bought me tulips on a whim. I’m so lucky, I know the hashtag is overused, but genuinely, when I get to have a day like today I feel genuinely #blessed. Normality hey, it’s super underrated.

Well, fuck. I don’t know what to say. We’re in the A&E. At first it seems innocuous, we got Kai’s glycine bloods back from last week, and they were a staggering 177.

Now here’s the thing, 177 is good, it’s within normal glycine range…. but it’s not Kai’s normal. Kai’s normal sits at 250-300.

The thing with Sodium Benzoate is that if there is no glycine to bind to, then it gets toxic. If it’s toxic, then calcium and potassium get dangerously low. So I rang our CCN (community care nurse) and practically demanded bloods taken, so we could find out. She asked us to come in tomorrow, but I persisted. The glycine results are a good week old, and I worry. I worry because the last time his glycine was this low, we were admitted into intensive care.

On top of this,Kai’s been grizzly all day, and when he’s not grizzly he’s sleeping, for longer and longer periods (another worrying sign, similar to our pre-intensive care stay last time). And the seizures. Oh the seizures, they’re more frequent, and longer in duration. Add the vomiting and I’m all over the place. Is it that he’s teething? Is it that the vomiting is causing an absorption problem with the phenobarb? Is it sodium Benzoate toxicity? I don’t know. We got a taxi to a&e who were expecting us. We walked in to see Dr Lukas, one of our regular registrars from our last visit. I’m glad we knew him. I’m glad he knew us. I was so relieved.

So, we did bloods. Bloods for kidney function (sodium, potassium and calcium levels) and liver function (phenobarb levels) and for amino acids (oh hey glycine) and two pipes, covering blood/gas and a regular blood panel. 

But then Kai didn’t keep his feed down. And he was inconsolable. And then he had three seizures within an hour. Our emergency plan kicked in then, even when we were in a&e. We busted out our rescue meds, and Sam (having arrived after work, I’m so grateful for Sam and that he came) gave buccal midaz. Poor Kai. He was screaming at this point, and then the midaz knocked him for six. Oh my baby. 

I also called our symptom care team to let them know what was going on. I was very in control, but inside? All over the place. Emotionally well all over the place. I felt like I leaking out the edges, I was stressing out over his feed (we didn’t have a feed pump, and I kept forgetting to ask the nurses for what I needed, so every time they came back I was asking for something, a 20ml syringe for an aspirate, a 10ml syringe for a flush, sterile water to make up a feed, more for the flush… on and on. I was very glad when Sam arrived. I’m always much more centred when Sam is around).

We were moved into a bay closer to the nurses station, and then into the assessment unit. And then came the waiting. The endless endless waiting.

Fingers crossed hey. Fingers crossed he’s going to be okay.

Update: 

Bloods came back good hours and hours later. It’s teething. We think. It’s definitely not Sodium Benzoate toxicity. Thank goodness. It’s the not knowing that bothers me, so I’m grateful to know for certain. We’re going home.

The Mayor of our borough is a patron of our Hospice – run by the charity Shooting Star Chase. And as such, he invited the hospice goers to tea in his parlour. Sam was keen to go, so we dressed up in our Sunday best and off we went. To tea with the Mayor of Wandsworth.

Can I just say first, the Mayor has it well fancy. You walk into the lobby and all the floors are marble, and fancy panelled walls and it’s all very very oh la. He’s also driven around in a limo. 

It was a lovely little meeting. We talked about Changing Rooms, and generally about Kai. The current mayor is Councillor Richard Field – he’s lovely. Before being Mayor he worked at Twickenham – he had some lovely stories to tell about Sean Fitzpatrick.

It was a pretty nice tea, actually. Very fancy. It’s nice to feel like we’re part of the community, and I appreciate that the hospice invites us to events like this. 

Okay. So it looks like we have them under control. Ish. We’ve adjusted his meds for his recent weight gain. We give the phenobarb and sodium benzoate slowly, at the end of a feed, in the hope he’ll keep them down. If Kai doesn’t, hes already had some time to absorb the others.

So, we move forwards. Seizures are back as part of our days. We manage them. We keep them under control. We can totally do this.

And just like that, after such a good spell, the seizures are back. They look different, having changed their MO, and I didn’t identify them as seizures, but the more they happened, the more sure I became. 

I’ve just faced the fifth seizure of the day, and I’m heartbroken. More than heartbroken, that word doesn’t even begin to convey my despair, my fear, that sinking feeling you get when you suspect your world is tipping over sideways again. Do the next few days mark the beginning of another stint in intensive care, in hospice? We’ve only been home eleven days. 

We suspect it’s because Kai is not tolerating the phenobarbitone. He vomits consistently after each dose. Doesn’t matter whether he’s on gaviscon, before the feed, after the feed, diluted. I hate pumping his little body full of drugs, I hate when he vomits, he gets so upset, and holding your baby while he screams is horrid. I always want to cry along with him, it’s so unfair. So horrific.

It’s in such contrast with happy Kai. Sometimes, after a feed with no meds I’ll get a glimpse of what it could have been like. With a clean nappy, a full belly post burp, he’s positively delightful. He smiles, and coos and makes eye contact. He lights up my whole world. He’s happy, and will interact with us. 

I love that little version of him, and I’m constantly striving to keep him in his happy place, but it’s so fleeting. We give him so many horrid meds. He vomits so frequently. And now the seizures are back. 

I just feel battleworn. We’re only four and a half months in, and I’m battleworn. The only way I get through today is by hoping tomorrow will be better. That tomorrow there will be less seizures and more smiles.

Please, if there is ever going to be an end to this, it’s in a cure. A proper, honest to goodness conditional gene therapy cure. 

I know I’ve asked a kajillion times, but on a day like to day where it’s so clear that every moment we have is precious, that every day could turn, I’m going to ask again:

Please donate towards research. Please. 

If not via donation, please fundraise. 

Just, please help us fund a future for our son. 

I decided that, despite my dislike of being reminded just how disabled Kai is, I couldn’t avoid neuro-typical babies. That to try would mean becoming a hermit lady and never seeing any friends. Not the most viable plan I’ve ever made. As much as I’m still grieving Kai’s alternate healthy future, I decided that I would just pull the band aid off quickly and surround myself with neuro-typical babies. I wanted to be over this.

Conveniently, NCT has provided a whole group of lovely beautiful neuro-typical babies who were about Kai’s age. Since we were in hospice, I’ve ignored the whatsapp group we had. I hadn’t said we were back, and when they organised a trip to our local Baby Bach (a small concerto for babies in a local church) I was determined we would go. 

Can I just say that getting out of the house when it’s just me and Kai is a giant faff of a mission. Not only do we need the typical round of nappies, wipes, change of clothes and a bottle, but we also had to have the meds, the emergency notes, the emergency meds and the escalation meds. We had to have the feeding pump, the strips to check the ng, syringes for aspirates and the power cable (just in case). The last time I went out with our NCT ladies, it was coffee and I ended up calling an ambulance for all the seizures. I’d forgotten half the emergency meds and the power cable and ended up being quite stuck. Never again, now we travel with everything on the off chance we need to go to the hospital.

So, I drew everything up ready to go, for both the feed and meds we’d hit the end of, and the next lot just in case. I managed to load Kai into the buggy (I actually did it three times, after a nappy and a vomit required two hasty buggy evacuations) but when I locked the flat door behind me, I mentally high fived myself. We, at the very least, had left the flat.

I wish I’d looked out the window before we’d left, I might have changed my mind. It was windy. Hurricane windy. Pull tree’s down windy. From the gate it didn’t look too bad, so I chanced it. What a terrible, terrible idea.

The church was a 20minute walk away, with a big park in the middle. The walkway through the park was like a channel for the wind. Twice the buggy was almost turned over. With Kai in it, and my holding on. I might as well have been walking a giant sail out and about. Worse, was that I hadn’t realised that our weather shield was actually for the carrycot. Kai has grown out of the carry cot with his long legs, and was sitting the pram proper.  Which meant that the weather shield plain didn’t fit. 

Needless to say, Kai now hates the wind and screamed the entire way there. 

When we finally got to the church, I had another high five moment. We made it out of the flat, and despite the weather, to our destination and just as the concert was starting. No matter what else happened that day, we’d already gone over and above my expectations.

Which was pretty lucky, because Kai did not care for the concert. Not even a little bit. There was lots of screaming and at least half a dozen poopy nappies. It’s like he saved up all his poop and then released it all at once in protest. We spent most of the concert in the bathroom. Which, by the way, the baby changing station was in the disabled bathroom which I’m pretty sure no disabled person was going to fit in, considering how small it was. On top of that, perfectly capable non-disabled people had used the bathroom and it smelt rank. People are so gross.

So, instead of spending our morning like I imagined, blissfully listening to a world class pianist play some pretty music, we spent it stressed in a horrifically smelling bathroom. 

By the time Kai was empty, we had managed to catch the last song, which was pretty. And then the nursery rhyme time – that was pretty good too. I think Kai enjoyed that, it was much more upbeat.  And meeting our NCT friends. I’m so lucky to have banded with such an amazing group of ladies – they were openly happy that we were there and not at the hospice any more. Honestly, once I was there it was so easy to shrug off the fear. And oh, their babies. They have such beautiful beautiful babies. 

We spent the afternoon over coffee and it was just, so nice. A nice slice of normality. By the end of the coffee, I wouldn’t have said I’d thrown off the comparison fear, but I’d at least made dent in it. It was nice to hang. Nice to see their beautiful babes. Nice just to be out and doing things.

It wasn’t an easy morning, but I’m so so pleased we went. 

We’ve had to reorganise plans for visitors several times, just because Kai hasn’t been well, or there’s been unexpected hospital visits or whatever. It’s the hardest.

I loathe being socially flakey, I know that friendships are built on time together, on being reliable and just, being someone people want to be friends with and come and see.

We’re pretty isolated at the moment, so when we do see friends it’s more amazing, more touching more everything. I have so much love for the people who have gone to lengths to come and see us, even when we haven’t reached out.

So when we’ve had to rearrange plans again and again, it irks. I understand why we do, and I’ll forever put Kai and his wellbeing over a social visit but it still irks.

I love my friends, I love hanging out with them. We’ve got a great crew around us, really, so to have to rearrange, it just sucks. I fear that eventually we’ll be too difficult to hang with, that we’ll be too unreliable. I haven’t figured out how yet, but I’m determined we’ll have some kind of social life!

So please have patience with us, we still want to see you and know you and we miss you guys. If you’re in London and want to visit, we’d love to see you for something low key. If you’re okay to come and see us, we’d love you even more for it.

Message me with some dates, okay? Seriously – please do. We miss you guys! 

Our first weekend home, we hit a series of milestones. Sam’s Mum has been with us this first week to help ease us in, and she’s been amazing. Small things, just being helpful and making sure we’re fed and clean and have everything we need. I love watching her love on Kai – medical people aside, she’s the person beside us to have spent the most time with Kai and he responds so well with her.

When we had to say goodbye, we felt a bit uncertain about how things were going to go. Sam and I managed – we knew we would – but it wasn’t smooth sailing. In saying that, this weekend was the first time in forever that it was just us three. Just our little family, and oh. I can’t even begin to explain how amazing that was. No medical people checking in, just time for us three. It was shakey, but so so freeing, and so so needed. I revelled in the joy that was the just-us time. I wonder if this is what it’s like for other new families all the time?

Kai didn’t make it easy for us though. There was a lot of vomit. So so so much vomit. And he pulled his NG tube out. I love seeing his cheeks free of tubes, and I love his determination to yank it out but the necessity and putting it back in is heartbreaking.

I’m glad Sam had the training, because it was on him to put the NG tube back in. We called a friend of ours who lives around the corner just to watch, just in case. She’s a paediatrician, and spent some time in Africa developing an infant help program (very familiar with ng tubes). And with a swaddled squawking baby Sam inserted the NG tube like a pro. It was a bit nerve wracking for me, but I’m glad Sam was able to step up for Kai. 

While Kai was squawking – we noticed his first tooth come through. I was unprepared for that little toothy peg, but there it was. Small little baby tooth, right there in his mouth. It blows my mind, because I forget that he’s growing. I feel like we only just managed to get home, that we’ve only just got our feet under us before Kai is changing it up again. 

Still. Loving being home. Loving being here with him. Fingers crossed we’re here for the long haul, hey. 

I can’t even begin to tell you guys about the outpouring of love we get every day. With every post or update there are emails, facebook messages, whatsapp messages, comments and texts. So so so much love. We’re so grateful, we really are, that there are so many people in our corner. So many people thinking about us, and following our story.

But sometimes, some of the messages, while good intentioned,  aren’t as helpful as one might think.

I read a thing today, an article by Tim J Lawerence about how things don’t happen for a reason.

It’s a good article. I’ve struggled with the words ‘everything happens for a reason’. People say it all the time, but I’m not a fan. That Kai having a life of pain and hardship ‘had to happen’ for something better to occur? For some kind of improvement to happen? For us to raise money so a cure can be found? So we could discover what kind people we are or friends that we have?

Tim says it better in his post than I could:

Kai’s disorder can’t be fixed. I have hope in NKH research, which is why I bang on about fundraising and how if you really want to help us, fundraise for NKH. But right now, the dreams we had for Kai, the experience of raising a typical baby, the imaginary life we thought we were going to get, we can’t fix them. We grieve them. We grieve Kai’s future, and the pain he’s in, and the future we thought we were going to have.

Which is also why the phrase ‘I can’t imagine’ isn’t helpful for us. Because we can’t imagine living this life either. Because when someone says it, it’s impossible not to silently add ‘and I’m glad it’s not happening to us’ on the end of it.

Here is what is helpful for us to hear:

“We have donated. We are organising a fundraiser. We are raising money for NKH. We are doing something.”

I know this is a difficult one. I know it means work and effort and it’s harder than sending an email telling us you’re thinking of us. But this is the single greatest thing that can have meaning for us, this is one that is most important – the doing that says we believe a future is possible, and we’re helping you get there.

Research is so significant for us, because it is the sole ray of hope we have for Kai’s future. So many of our doctors and consultants are doom and gloom, who say that because we can’t treat the underlying disorder, we should be concerned with keeping Kai comfortable (silent addage: and wait for him to pass on). We hear this at every visit, every doctors appointment they reference his death and how hopeless treating anything would be.  What keeps us going is the hope. Hope that a treatment will be found through research. Raising money for that research, that is significant for us. As one of the other NKH mums says, in regards to research, hope is on the horizon.

It’s also helpful to hear: “You can do this. We hear it’s hard, we hear that you are struggling and we hear that times are difficult. But you’ve got this. You can do this, you can face the scary hard unknown, and you don’t need to do this alone. We are here, and here is an actionable thing we will do with you.”

That last bit? The actionable thing? Better than ‘if you need anything, just ask.’ Or even “just letting you know we’re thinking of you.”  The actionable thing that would be most helpful would be if you had ten minutes, half an hour, an hour to google some NKH stuff for me.

About what seizures are and what supplements can help him recover (Taurine? Tyrosine? Omega 3? Alpha lipoic acid?). About how a type of medication works. About how to teach a kid that can’t swallow how to swallow. What a keto diet is and can you do it while breastfeeding? Is the keto diet good for glycine? Is it better or worse than the low glycine diet for NKH? When should we introduce solids? How do we do solids with no swallow? When we can get a g-tube and what kind of solids can we do with that? What physio/OT things should we be doing? What benefits can we claim? What research programmes should we be a part of? Should we be getting a tumble form? Is there a grant we can apply for for things like bath equipment, extra physio or osteo sessions? When do we start worrying about scoliosis? What things should we be worrying about that we don’t know yet?

My list is exhaustive and goes on and on and on.

Or the actionable thing could be something from the help list. Or it could be you just showing up. “I’m coming to visit next week so we can gossip and you can experience some normality. What day is good?”

I don’t mean to complain, or ask for anything. No one owes us anything, and we’re so so so grateful for the love, and the immense waves of support. Just, please no more ‘everything happens for a reason’ or ‘I can’t imagine’s. Also, if people could stop using the word ‘retard’ as an insult, that would be good too.

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.