On being post gastro

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We’ve had the gastro for a while now, and I was surprised at how some things have changed.  The biggest being Mikaere doesn’t have the NG tube anymore, which means there is nothing on his face. Spelling it out – when he’s in the buggy you can’t tell that he has a metabolic disorder. He looks neuro-typical.

This means that the attention he gets has dramatically increased when we’re out and about

The scared ‘there is something wrong with this baby’ looks and side comments and fear when people peer into the depths of the buggy has gone. Other parents give me knowing smiles (what is it they know? I feel like there’s a shared secret I don’t get) and people now want to ask about how old he is and how tall he is and tell me how precious he looks. That annoys me, because Mikaere hasn’t changed, just people’s perception of him. Initially I wanted to explain about his disorder, tell them in detail about NKH but I soon realised that one, they don’t want to hear it, and two it takes up waaay too much time and all I really want to do is finish shopping and get Mikaere home away from possible-germ-carrying strangers.

It’s not all bad though, Mikaere still goes for his nose when he’s upset, but we don’t stop his hands anymore. Which means he’s got full access to touching his face. We don’t have to pass tubes anymore and I’m delighted we’re not dealing with the screams from that. Not trying to get an aspirate has been liberating. We’ve started a pseudo-blended diet, which has been good for Mikaere, I think.

The wound is healing nicely, slowly but surely. I’m positive it would have healed even faster has Mikaere not pulled out his stitches yesterday. We’re a few weeks past the gastro now and the button is at the right spot for him to reach without having to support his elbow or move his shoulder in a big sweeping movement. It’s in the sweet spot of reaching. So reach he did and with one big yank had pulled the stitches off the top of the button and almost pulled the whole thing out of his stomach. I had a heart attack and my poor sweet boy screamed. Good thing we were already in hospital for another appointment. And rushed upstairs to the ward to find the on-call surgical reg, who pushed the button back in and restitched what he could.

So cheeky. Mikaere’s clearly been a bit more sore than usual and on top of that he’s not tolerating his feeds/meds as well as he usually would. Which means we’re in the world of all the vomiting. Like, projectile out the nose vomiting. All the time. Everywhere.

We’ve slowed down the rate at which we feed him, the volume and what we’re feeding him (no advice needed, is what I’m saying). Everything is gentle gentle. We vent frequently, the feed goes across three hours (previously took half an hour). He will eat a tiny amount orally, but no where near where he used to. So we spend a large portion of our days feeding.

I’m getting really good at getting baby food vomit stains out of things, too.

Hey ho. Give us a few weeks of healing time and I’m positive things will be better.

I can’t believe we’re on the other side. Mikaere has a gastrostomy. Hallelujah!

On the ward

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I’ve never been so grateful to be on the ward. Back to shared rooms and small cubby’s and nurses shared between three beds.

Mikaere tolerated his meds on a diarolyte solution. He tolerated his formula. He did NOT tolerate food. Womp. There was vomit. So much vomit. And with every vomit we tack a day on to how long we’re in here.

It’s not so bad though. We’ve got our own cubicle at the minute, having moved out of the shared room. We’ll revert back to formula at a rate he can manage (slow and steady). And our days are slow and easy as Mikaere recovers.

We take walks around the ward, and set up a rotation of toys from the play specialist. We read books and sing songs and take naps. (Best tip I ever got was asking for an adult sized bed instead of a crib. Mikaere doesn’t roll, let alone climb over everything so is in no danger of rolling off with the sides up. It means we’ve got more space to manoeuvre him, space for us to sit and a nice spot for a joint nap).

The other bonus is that we’re still doing the meds ourselves (it’s a bit of an ongoing thing, Kai’s meds are complex, and the nurses and the chart are always wrong, so we do it to make sure it’s the right med at the right dose at the right time).

We’ve also continued our at home nurse help, which has been amazing. Because the hospital nurses are there for emergencies, we haven’t had to stay the whole time – knowing that there is someone Kai knows and we trust has been amazing. It meant I was able to come home to sleep once or twice (a proper 6 hour sleep in a bed after a shower is pure bliss).

We’re in no hurry. We’d obviously like to be home, but this doesn’t feel like our other hospital visits. Mikaere is not sick. He’s not fighting for health. He’s not struggling.

There is the the occasional vomit while his stomach recovers, so when the surgeons suggest another day I’m not heartbroken. Kai is going to be okay, and once he goes a full day without vomiting we’ll be discharged.

Update: later that very day we went home. Five days end to end we were here, from fasting to discharge. I’d expected to be here at least a week or two, five days feels swift. Hallelujah we’re home!!

On coming out of surgery

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When the nurse came into the parent room and said Mikaere was 30 minutes away I let out the tiniest breath. When she came in 20 minutes later and said not only was Mikaere now in PICU, but screaming I wanted to cry. Screaming meant he was awake. Screaming meant he wasn’t on a ventilator. Screaming meant all the fear and worst case scenarios were not us right this minute.

I barrelled across the hall, washed my hands with lightening speed and rushed to comfort my baby. He’s cheeks were bare – no ng tube. He was covered in wires, and as he thrashed about he caught his hands in them.  His little fingers scrambling in wires to measure his head rate, his respiratory rate, his o2. Red, green, yellow wires. The white chunky ones for blood pressure, the cuff around his forearm. The probe for secondary stats. Tubes going to his cannulas. A nasal o2 tube. And there, bang smack in the middle of his belly was his new button, stitched into his lily white skin.

So many tubes. So many wires.

But the relief was overwhelming. He’s fine. He’s alive and here and very opinionated in his objections of what just happened.

Despite the wires I scooped him up for a cuddle – that’s the bonus of having been in PICU before. You know which tubes are precious and which aren’t and which to watch for when you want a cuddle. I wasn’t intimidated by the wires. Not even close.

And sure enough, once he had a dummy and was safely snuggled in my arms, he settled a bit and stopped screaming.

My beautiful baby. It felt like we’d gambled for an improvement of his quality of life and we’d come through. The relief really was overwhelming and I felt like I was constantly holding back tears. He was fine. He was here. No coma. No vent. Just baby outrage and cuddles.

As he calmed and we settled into the afternoon, everyone relaxed. We stepped back in the world of intensive care. We said hi to the nurses we knew, who knew us. They all marvelled over how big Mikaere had gotten. We knew the system, we knew the room. It was all eerily familiar.

Once Mikaere was on pain relief and happy bundled up in my arms, the weight of the world dropped from my shoulders and we relaxed.

It felt weird to be in intensive care relaxed. The last time we were here we were being discharged into hospice on end of life care. Mikaere got baptised in that bay over there, a just in case emergency baptism when we weren’t sure whether he was even going to make to hospice. That bay was where he met his Grandad Gedge for the first time. We spent Boxing Day last year over there, and hours upon hours in the bay we were currently in. This room was full of grief and memories. Our fears were all here. It felt weird to be there and not feel that. Mikaere was *well*, the most vulnerable moment had past and we were in PICU just in case.

I could feel the grief of other families though. I heard a ventilator beep and recognised it as an o2 drop. Maybe a blockage in the tube, maybe some suction required. I heard someone else crying over their baby. I heard a pump beep indicating that the syringe needed to be changed over, a mum try comfort her son, a support worker talking in hushed tones and a musical light show as a distraction attempt.

I heard all these things and remembered and was infinitely grateful that none of those things were Mikaere right now. We’d lived that before and instead my son had only observational wires and a dextrose/pain relief solution through a single cannula. That and his brand spanking new gastro button. All positive things. None of these things were dire, intensive care things.

Thank FUCK.

Even better, one of the consultants stopped by for a chat and some baby love. She mentioned that if they needed the bed we’d be the first ones to be evicted from PICU up to the ward. I loved her for sharing that. That if anything happened, Mikaere was the healthiest in the room. He’s never been the healthiest in PICU before.

And so we wait. We see how Mikaere goes overnight. How he tolerates formula. How he manages his pain. And tomorrow, fingers crossed, we’ll be discharged from PICU and make it up to the ward.

On between the MRI and the Gastro

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We saw him briefly. So briefly. We knew they were coming because we heard them readying him for transport. I was already standing to the side when the doors burst open. Our Tuesday carer, Wai, beside me.

He looked so little. He had a vent (horrid and wonderful life saving things that they are) and his eyes were taped shut. Two cannulas were in his feet.  Irritating, because we’d put numbing cream on his hands and inner elbows to help with the pain in going in.  His hands and arms were covered in red puncture marks where they’d tried and failed to get a cannula in. (Turns out the numbing cream is also a vascular constrictor.. fail).

He looked so little. So vulnerable.

Mikaere was being moved from the MRI clinic (an adult clinic which they’d commandeered for him because it was closer to the paediatric OR) up to theatre.

We rode up the elevator together and I gently held his tiny little hand. More for my comfort than his.

We stopped in the corridor near the OR – no parents past this point. Only patients and doctors. Saying goodbye a second time was equally rubbish. Still, I was grateful I got a glimpse of Mikaere. That so far he was doing okay.

We went down the hall to the Paedatric Intensive Care. We knew he’d be going there after and were told we could leave our stuff in the parent room.

It’s a tricky place, fraught with familiarity and grief from when we were there last year. I got flashbacks of Christmas and New Years. The microwave dinners we’d had on our knees, wolfing down food so we could go back into PICU. The tears, the quick power naps, the unbearable waiting that happened when we had visitors and it wasn’t my turn to be with Kai (it’s only two visitors to a bed, so turn taking is a thing). Mostly I remembered the fear. Of not knowing what was going to happen, of Mikaere sinking into a worse and worse hole. Of everything seeming so overwhelming and horrid.

I’m glad we weren’t under the same circumstances this time. Oh waiting. I willed time to pass quickly.

On Getting Underway

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I was left standing the waiting room with a handful of my babies clothes and his dummy, my heart in my throat. Walking away was rubbish, watching four strangers crowd around my baby, looking so little on the giant adult sized bed, blue gloved hands busy attaching probes and doing medical things as Mikaere lay there unconscious as we were ushered out the door. Leaving was hard. Trusting them to do their jobs and their jobs well when my little guy was asleep on the table… difficult.

I was unprepared for the leaving part. We’d been waiting so long for this all to finally go ahead, that I was more focused on tee-ing everything up, half believing it would, again, be postponed that when it was go time, I was unprepared. But there you have it, after months and months of waiting my son was right this minute being put under and I was being gently  pulled out of the cubicle.

I wanted to cry when we left him and I almost caused a motherly fuss – my fear was overwhelming. (I don’t know exactly what I’d be fussing over, the right to stay? It doesn’t make any sense, because I know we’d never be able to stay. Emotions – not always logical).

There was a girl on the ward last night, while Mikaere fasted. She must be 18, young enough to be on the paediatric ward but old enough have a 1 year old of her own. She’s dislocated her jaw and has all the fear about the pain of having it reset in place. I overheard a lot of her fears and anger and confusion. Hours of it. She desperately wants to see her baby but can’t get over the fear of the pain that comes with having her jaw reset. And until it is, she can’t leave the hospital.

I’m not getting down on her, because I was there when they tried the first time and I heard how that went. But at the same time, I think the moral of the story is there is a choice. A short, sharp spike of pain and its done – no more pain, or a long drawn out pain while you wait and sit with your fears and fuss.

The main thing for me was how her fuss made things difficult for everyone else. For her family, for the nurses who were trying their very best to help her with her pain, the consultant who was on hand if she wanted to try. Us, and everyone else in the room who silently listened to her process all the things.

And as I sit in the waiting room for the first of this long drawn out waiting process of my own, I feel like it’s best to just get on with it. Waiting is rubbish and my fear of it all going twisty and wrong is high, but there is no point making a fuss. I don’t want to be like that girl on the ward going on and on, when I have the power to emotionally move myself forward.  So instead I sit quietly and write you guys a blog post.

Mikaere’s under the general anaesthetic and is having an MRI. Up next, gastrostomy. I can’t sit still and I keep repeating that Mikaere will be fine. He will be. And I wait for the MRI doors to open.