On the now

By 8th March 2017 No Comments

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.

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