Dear Kai,
Four months! This past month feels like another saga, so much that is frankly unbelievable has happened. The biggest is that this month we lived in hospice. In *hospice*.
In the beginning the phrase ‘end of life care’ rang out like an infected wound. We were in hospice… you hadn’t opened your eyes since before Christmas, you were still seizing like no bodies business and the ‘terminal’ part of your little glycine problem felt much closer than I would have liked.
But it turns out hospice isn’t like you expect. It’s nicer. Nicer than hospital. It’s a bit more comfortable, a bit more relaxed, a bit more homey. We fell into a kind of routine. Every morning I’d collect you from the nurses, asking about your night and the number of seizures. Every day I’d sit with you, love on you a little, willing you to wake up. Daddy would be working upstairs, but would come down for frequent cuddles. We’d eat with everyone else, watch a movie with you in my arms after dinner and later, wheel you out to the nurses station before bed. Your seizures were ridiculous, sometimes you were having 20+ a day that required breakthrough meds. We’d wait the required 5 minutes before poking our heads round to the nurses, a bolus of midazolam would sedate you back to your seizure free coma. We had doctors wander in and out, and as the weeks went on, we got to know a lot of the residents here.
Still, like our little solider, you pretty much ignored the ‘terminal’ part. One day your midazolam syringe driver stopped working. Midazolam is horrid, and thick and syrupy, and for the whole day while the nurses fussed about pumps and drivers, you tolerated the extreme wean. Even better, when you didn’t have any more seizures than usual, we tentatively decided NOT to put you back on Midazolam.
Shortly after that, you began to open your eyes again. Your seizures dropped off, and oh my baby, you seemed wonderfully aware and so very WITH US. Sure, you’d lost a few skills. Your ability to suck disappeared, and any kind of head holding up business, but you were awake and not seizing quite so much and your cry came back. Loud, beautifully loud.
Now that you were on the NG and not refusing the bottle, your cheeks grew in, and you started collecting all that weight you were missing. You put on weight like a proper bruiser, and everyone, literally, would coo over your beautiful thigh rolls, or your delightful chipmunk cheeks. As your cheeks expanded, hilariously you started losing your hair. You had beautifully dark wispy locks, but now we think you’re going blonde!
Life at hospice got much better once you woke up. We took you swimming, which you loved. Mostly. I definitely loved it. You chilled out in the pool, often going to sleep if we kept you in too long. You’d scream getting out, too. And if you lost a few skills, you gained others. You started smiling! Little fleeting grins. Not at us per say, but just quietly to yourself. You started holding on when we pick you up too, curling your fingers into our shirts, clinging with your arm around ours as if we’d ever dare drop you. Sometimes you’d coo at us which was such a delight. You also got better at focusing, and you’d look AT us, rather than through us. Oh my days, you can’t imagine how my Mama heart swelled when you were finally looking at us, making proper eye contact, and even turning your head to see us if you heard us speak.
As you learnt new skills, so did we. We learnt all about feeding pumps and giving sets, running the feed through and cleaning out it became part of our everyday rigmarole. We’d fight you and those little fingers that ever seemed to be finding your NG tube, often yanking it out. We became competent at getting aspirates before every feed and med round. Rolling you onto your side, doing mouth care. I preferred to drip milk into your mouth, knowing that if the aspirate came back white it was still in your belly instead of your lungs.
Eventually, hospice became our new normal. It was more relaxed than hospital, but still not home. Our family slotted in to hospice life. The nurses would jostle for cuddles. One nurse was even cheeky enough to steal a cuddle right out of Daddy’s arms! Every day there would be something. You especially enjoyed physio with Pam, often smiling for her, chilling out as she gently stretched your little legs. Or baby massage with Angela. There was a time when you were so constipated from all the meds we were giving you, and magic Angela – she always managed to make you poop.
We learnt an awful lot of songs while we were at hospice (which I think delighted you). Were we could we took part in Music Therapy (you seem partial to the flute) and Art Therapy… well, as much as you could do. We made you a sensory book for your feet. We even managed a walk here and there outside in the cold. We watched your first snow from hospice (and your second. And third). We stole as many moments as we could. You were particularly fond of Daddy cuddles in the early morning, as I’d wheel you back in from the nurses station, you’d grizzle until I put you into the big person bed, into your Daddy’s arms for a quick cuddle before he had to get up for work.
We had an outpouring of love from Team Mikaere. So many people donated to your justgiving campaign. So many people sent messages of love and hope and gifts (so many gifts!), so many people offered to help research (thank you!) and just, so many people helped.
We also had a few opportunities to participate in the wider NKH community, with a rare disease conference and meeting another NKH kid. Eye openers, both experiences, but more in the ‘we totally got this’ kind of way.
In saying that, your schedule is insane. Your feeds are four hourly, but as you’re on a pump, it ends up being two hours on, two hours off. We start the pump. wait two hours for the pump to finish, clean it all out and then wait another two hours for the next feed. Your med schedule is ridiculous. Easily ten times a day with different meds. Some need to be on a full stomach, some half an hour before anything else, ideally with an empty belly. Some need to be given slowly (slower than a 1ml a minute) and some are goopey and some smell horrid. And if it wasn’t one thing it was another. Projectile vomiting with the meds. Constipation. Diarrhoea. Nappy rash. An infected subcut site. A face of baby acne from the steroids. Cradle cap. Every few days a new something would hit us, and you’d just continue forward. Onwards like it was no big deal, and I’m so glad you did. Weaning this, and talking to that doctor, and organising road trips to one hospital after another.
Every day with you is precious. Every day I’m grateful you’re still with us. I know that you don’t believe in your terminal disorder, that you, you wonderful little fighter you, just keeps going like life is meant to be this difficult.
Here’s to another month down, you cheeky little monkey.
Love you more than you know,
Mama x
