Tag

hospital

Oct 26
0

On the first hospital visit of the season

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And just like that our little man is back on oxygen, working overtime to keep his o2 levels up (and failing). It’s the first stupid cold of the season. We had a nurse overnight and when I walked in this morning she was just getting ready to wake us – Mikaere’s o2 level was sitting at 89%. Typically it’s at 99% – 100%. 89% is LOW. Lower than I’d like, lower than anyone would like. And you could see it. My baby was struggling to breathe. His breath was fast and shallow, he had a tug and an intercostal pull. He was working overtime to breathe.

We have tanks of o2 sitting in the spare room for moments like this, and I pulled one out, grabbed an o2 mask. It’s been forever since he’s needed o2, and you can tell, because the mask is too tight on his face. He’s outgrown the paediatric baby o2 masks. Regardless, it does the job. I watch with relief as his o2 climbs back up to more normal levels, settling at 96%. In the safe zone. He relaxes a little, he doesn’t have to work as hard. Poor baby has a temperature, and we give him Calpol.

I take pause. Get dressed, say goodbye to our night nurse. Sam and I discuss whether we should go into hospital. He makes coffee and I think about calling our community nurse. His levels are fine on o2, but he hasn’t need o2 in I don’t know how long. He’s clearly got a cold of some kind. If it’s a cold, we probably could manage it just fine at home. We have o2, we have stat monitors and suction machines. He sounds a little rattly, but I’m pretty sure it’s all upper airway.

If I call our community nurse looking for reassurance, she’ll ask us to go into hospital. Go into hospital. Complex needs. Difficult case. Better safe than sorry. Go into hospital. They always tell us to go into hospital ‘just to be safe’. Everyone is scared of taking the chance to say does he really need to go right now? What are the risks? Benefits? It’s all go into hospital, and go now. The risks of being wrong is too high.

But the hospital isn’t safe for us. Mikaere could very well catch something else from the hospital. Something worse. Plus, it’s loud and tiring and disrupts our routine, and I’d really like NOT to spend our Saturday in the A&E.

In saying that… he hasn’t needed o2 in forever.

I make the call anyway, knowing she’ll send us in and alert the paeds registrar for us. Also, on a Saturday morning at 8am, none of the other kids have had a chance to hurt themselves yet. Their parents will just be waking up and they’ll take longer to decide to take their sick kids into the A&E. If we left in the next 15 minutes, we’d make it in just after the shift change when the paediatric A&E is quiet. I mean, if you’re going to go in, might as well time it for non-peak time, right?

Sure enough, our community nurse said to go in.  So off we go. We’re on our way into hospital. 🙁

Oct 19
2

On the hip X-ray

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Kids with low tone are susceptible to scoliosis (this is where there ends up being a sideways curve in your spine), hip subluxation (otherwise known as a partial dislocation) or hip dysplasia (where the socket doesn’t fully cover the joint) – it’s not awesome.  Apparently all three are painful (womp) and scoliosis can cause all sorts of eating problems (with your insides being stretched/squished by your spine).

There is a not a lot of prevention that can be done in kids with low tone… all the of the early intervention strategies are movement, exercise and positioning. But with kids that are like ours… what do we do? The NHS promotes positioning with things like sleep systems and regular (read: constant) repositioning throughout the day but really – that doesn’t prevent much. Exercise and strengthening the muscles that support the spine is whats needed, but that’s not helpful

Mikaere has low tone. He’s at risk of scoliosis and hip subluxation/dysplasia as a result. And you can see it, in the way he holds himself, how he struggles to stack his body the way that we do naturally – just how easy it would be for things just to misalign.

We spend all day everyday repositioning. It’s in how we hold him and how we move him and how we put him down, feed him and play with him. (There was a point in our first few days at hoe where I felt we were literally being taught how to be with our boy.  Every single moment with him is an physio/ot/development moment where we teach his body and reposition his body with an eye to prevention. Holding his wrists, repositioning his knees, encouraging him to turn his head one way over the other, it’s never ending).

Positioning is one of the many things we think about constantly. Because that’s what’s there is for scoliosis prevention – repositioning and supportive seating. That’s to say, it’s the only treatment until you get to full body torso braces and surgery.

So we reposition. We stuff supportive pillows and tubes and straps down the backs of chairs and his carseat and line them along side his cribs.  And every six months to a year he gets a spine/hip X-ray. So we go (if I’m clever I’ve paired the appointments with something else in the hospital). We X-ray. And we wait for results.

Our Physio knows it’s coming but we’re not ‘bad’ enough yet for a referral to orthotics.

This time there was no news. His hips don’t show any signs of sublaxation (hurrah) and his spine is still under the threshold for scoliosis treatment. Phew. We know that we’ll eventually be referred to orthotics, but we haven’t reached the ‘its bad enough for orthotics’ point yet. So we wait. We reposition. We put Mikaere in the stander. We hope.

So hey ho. Onwards we go.

Sep 28
1

On the eye gouge

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I woke this morning just early enough to do handover with our nurse, but I could already hear Mikaere grizzling. It was a rough morning, nothing would console him. We cancelled our morning appointments and hunkered in for some hardcore settling. At some point between the singing and the bouncing and the petting, I noticed that in Mikaere’s right eye there was a scratch. Literally, on the lens of his eye. Wtf.

Mikaere’s recently been able to reach his face with his little hands and usually he goes for his mouth (his aim is a bit shaky, sometimes he makes it, sometimes he doesn’t). I rang our CCN (our Community Care Nurse – our first port of call always) because wtf. Should I be concerned? Does he need drops? Will it heal? (Do lenses heal?!) I had no idea. I can talk to you all day long about bloods and metabolic process systems but eyes? I don’t know very much about eyes.

Essentially our nurse said you don’t mess around with eyes, so we should go to the urgent eye clinic, but we needed a gp referral letter first.

Blah. We don’t go into our gps office (exposing Mikaere to sick groups of people in waiting rooms is something we try to avoid) so I called to organise a home visit. Except, after speaking to the oncall gp (a delightful Dr Bailey) he said he didn’t need to come out to verify there was a scratch on his eye. If I said there was a scratch there was a scratch, so without much drama he emailed us a referral letter (this is why he is considered delightful – it’s so nice when our team makes things easy for us).

Armed with our letter we made it down to the hospital… only to find out that the morning clinic had ended five minutes earlier and we’d have to wait for the afternoon clinic an hour and a half away. Womp.

Also, Mikaere needed a feed and I’d forgotten the hot water in my rush to get out the door (fail). So, back to the car with all his gear and we drove through the nearest McDonalds Drive through where I got a tea with no teabag (because apparently they won’t sell you hot water – what a day). Feed and meds done in the car park, drove back to the hospital and back into the eye clinic. Eye clinics are my favourite – the people at eye clinics aren’t sick with nasty chest infections. You can’t catch eye problems just by being in the same room. Look at all the otherwise healthy people with no respiratory problems! Best waiting room ever.

I spent the next 45 minutes trying to keep Mikaere awake (which was fun for everyone) and then we saw the doctor. She did her magic with some eye drops (top tip, pull the bottom eyelid away and let the drop fall in the well you’ve created – MUCH easier than trying from the top eyelid!!) and using her UV light the scratch light up like a neon line across his eyeball. (Again, wtf).

Essentially, The doctor said he had scratched his eyeball. Probably with his nails (!) and it probably hurt like a paper cut, but in his eye (!!). She said it would heal (thank goodness) but in the meantime she’d provide drops to make sure it didn’t infected and to keep his fingernails short.

What a day. So, we went home armed with drops and now I spend all day yanking Mikaere’s hands away from his eyes. Eye gouging. I still can’t believe it.

May 14
1

On meeting Prof. Nick Greene

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We’re really lucky to live in London. One of the best cities in the world, for sure. One of the benefits is that it’s in this city you’ll find UCL, one of the main centres of research for gene therapy (a large chunk of the research done in the gene therapy community comes out of UCL). Conveniently it’s the centre Prof. Nick Greene is based at while he’s working on an NKH treatment. This means he’s in the best possible place in terms of the knowledge available to his team – they benefit from the knowledge the other teams are working on. Very exciting.

Even better for us, UCL is attached to our specialist hospital. So when we went in for Mikaere’s metabolic check, we met Nick for a coffee.

You guys – there is so much going on in the world of NKH research. In terms of understanding the development of NKH in unborn children, understanding the wider implications of NKH and the knock on effects into the one carbon folate system, making cell models, looking at treatments (like the components that make up cinnamon!) into bigger cures, like gene replacement therapy in mice. There is lots happening, a lot of moving parts. Very very exciting.

It’s inspiring, meeting Nick (who is the nicest guy, for sure) literally made me want to throw more money at research. Because that’s it, right? The more money the more research.

I talk a lot about fundraising. I ask over and over for donations, constantly putting my hand out (and I’m so grateful for the love and grace shown to me, you guys are the kindest and most generous friends we could have) – but what it really comes down to is I have the deepest hope that in Mikaere’s lifetime NKH will be a thing of the past. That there will be an effective treatment and future babies and families won’t have it like our kids do now. That our babies won’t die.

Now, that’s a lot of pressure to put on people like Nick, but to talk to him and have him discuss where they are right now and where they are going? It gives me hope.

When we met it was a beautiful day in London. Even better, Mikaere was on good form. He was sitting and talking and very awake and aware and interested in the world around him. I know the researchers don’t always get to see the day to day life of kids with the condition they’re researching (at least not in NKH. In NKH they’re still in mouse model stage) so it was a nice moment for Nick to meet Mikaere again. To see how well he’s doing, the development he’s making.

It was such a nice afternoon. I love that I live in a city where I can meet the guy trying to cure my sons terminal condition for a coffee. What a world, hey?

Apr 11
2

On the MRI

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Mikaere is doing really well, for the most part. We know this. We know his eyesight is improving and his tone and abilities are improving. We know Mikaere is doing the best he can and we’re currently in a time of forward momentum when things are good.

Except that we went and saw a neurologist who said that Mikaere’s MRI showed a loss in brain mass. A loss in BRAIN MASS. There is less of Mikaere’s brain because his neurones are dying.

Despite knowing this was likely intellectually, seeing it spelt out on a black and white MRI scan felt like a punch to the face.

We are doing everything, everything we possibly can to help him. And still, NKH is robbing Kai of his brain matter. His brain is being damaged, constantly. All day every day parts of his brain are dying. It was very very clear, even to me (someone who has no knowledge of neuro-radiology)

flicking between the scan he had with his gastro and the scan he had when he was born just how much damage has happened.

It makes me feel like I’m not enough.

The truth is that there isn’t anything I can do to slow the brain damage that’s taking place.

But I can fundraise for a cure. I can support Josephs Goal who in turn supports Nick Greene, who I feverently believe is closest to a clinical trial that will help he most number of NKH kids. They also support Dr Van Hove, who is the researcher with the most experience in NKH. It’s his research and knowledge that has opened the field for other researchers.

I believe between these two, they’ll find a cure for my baby.

I know I keep banging on. And on and on and on. But, if you’re able please help. Buy an Eva Book. Donate. Volunteer, if you’re able. We’re always looking for help to run fundraisers.

Help us find a cure. Help us find a way to stop stupid NKH from killing more neurones off in my sons brain.

Please help. It’s hard to sit in an appointment to hear his brain is deteriorating.

Mar 30
1

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!!

Mar 28
1

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.

Mar 26
2

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.

Mar 23
1

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.

Mar 16
0

On not having a paediatrician because the NHS is underfunded

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Everyone knows Mikaere is medically fragile. I’ve talked before about how large our medical team is and how we have an appointment of some kind every day of the week. Our life is a series of appointments and therapy and special needs groups. We go to all these things because it helps Mikaere, it keeps him safe, minimises risks, teaches him skills and relaxes him and puts all sorts of services in place for when things go belly up and he needs them. It’s a full time job, organising and ferrying him about, being present, understanding the goals and raising concerns and following up.

Of all these services, our paediatrician is the most utalised. He’s the person who knows Kai the best, who is our first port of call. He orders our meds and the bloods and all the checks. He’s our go-to person when anything is wrong, if the meds are out or there are more seizures or we need something. He orders all the referrals, the X-rays to check for hip formation and scoliosis. The orthotic referral for the suit, the physio referrals, the gastro surgery referrals. He pulls checks on all the difference services, speech and language, physio, OT, nutrition. He’s the person we work with, the person we make a plan with and who helps us works the system to make it happen.

We’re lucky that our paediatrician is covered on the NHS, as are most of the services Mikaere uses. For those not in the UK, the NHS stands for the National Health Service. It means that the basics of our healthcare system are free at the point of care. Meaning, we’re lucky that for the bulk of Mikaere’s care, it’s covered by the tax we pay.

Here’s the thing though. The NHS is chronically underfunded. It may not look like it from the outside, but it is.

Mikaere’s paediatrician was a locum, which means he was temporary while they found a permanent person to take that role. Which is fine, we knew this and accepted it. However, a month or two before end of the financial year the paediatric locums were let go as a cost saving measure. And – get this – there was a gap in care. There was a gap where there was NO ONE to pick up the case load, where Mikaere DID NOT have a paediatrician – our first port of call, someone to prescribe his many meds or chase anything (like that gastro we’re waiting for). We didn’t know where to go for all the things Mikaere needed.

My small, medically fragile and vulnerable son did not have a paediatrician because the hospital trust was told it needed to save some money.

As you can imagine, I raised an absolute stink about it. I emailed the Medical Director, Andrew Rhodes. I also emailed the Head of Child Services, James Gavin. I made an official complaint to the hospital, wherein they couldn’t tell me why officially why there was a gap in care. I emailed my MP, Justine Greening. I also emailed Jeremy Hunt (https://www.jeremyhunt.org/contact – and if you can, I’d ask that you email him too, and tell him chronically underfunding the NHS is having a crippling affect on the most vulnerable of our population). I’ve complained to CQC and I’m in the process of a complaint with our local ombudsman.

And nothing happened, nothing changed. I got a few platitudes and apologies but not much more. And that’s because the problem is bigger than the trust that runs our local hospital and provides basic care for Kai.

Underfunding at the NHS is happening and it’s affecting my family in real and tangible ways – for the worst.

And I know. I know we’re lucky to live in a country that covers care for us, and we’re grateful for that. Except that we also live in a system where we couldn’t afford care otherwise. We couldn’t afford to pay for private care. I had to give up my (wonderfully well paid) job to care for Mikaere, and point blank, if it came to it, we couldn’t afford care for Mikaere outside the NHS.  Just to be really clear, we are not talking about luxury care for Mikaere. We’re talking the basics of what he needs to be safe and to live.

We rely on the NHS for Kai’s care, and it has a direct affect on his quality of life.

NHS underfunding is happening and it terrifies me.