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hospital

Jan 26
0

On the gastro!

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The day after I posted about the previous gastro attempt we got a letter in the mail asking us to be admitted the following week – we were going to take a second shot!!

The paediatric surgeons were lined up, Mikaere was first. The adult MRI machine below the paediatric OR was booked and scheduled just before the surgery.

We signed all the forms, did all the fasting, and after a sleepless night (are hourly obvs on a healthy child really necessary?!), woke bright and early, was gratified to hear there were currently TWO paediatric intensive care beds available and we waited for our friend the anaesthetist to come by.

The look on his face when he walked in gave it all away.

The MRI Machine was broken. BROKEN. We had a choice, we could either do the gastro without the MRI or we could retry at a later date.

It was a no brainer, at the risk of it all go wrong with the anaesthetic, we’d purposely organised everything under one anaesthetic, including skipping the peg and going straight to a button.

Having the MRI under a second anaesthetic wasn’t in the plan, and we weren’t willing to risk it.

So we packed up and came home. For the second time.

When our nurse found out, she laughed. It set the tone, because of course we were frustrated but, this just seems par for the course. When I asked how frequently the MRI Machine broke, our guy said he’d never known it to be out of action, ever.

So off we go. No gastro as yet, we’re waiting for the stars to align.

Jan 10
1

On that time we almost got a gastrostomy

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It had taken months and months of planning – Kai was going to have an MRI and a gastrostomy under one general anaesthetic.  We need the MRI to set a baseline for any treatments we have going forward. We need the gastro to improve Kai’s quality of life and reduce the risk of drowning him every time we feed him. But getting the radiology team and the paediatric surgery team on the same page to do both procedures under the same anesthetic has been a massive wrangle. In the end it was two wonderful anaesthetists who we met in our time in intensive care who came to our rescue.

They agreed – because of the dreaded NKH and how kids with NKH respond to anaesthetic and ventilators we want to reduce the risks. So doing both procedures under a single anaesthetic was a good idea (woohoo!). They got the surgeons to agree it would be best, for Mikaere, to go straight to a button so he wouldn’t need a second anaesthetic down the line. They found a spot in the schedule of one of two surgeons who were willing to skip the PEG and go straight to a button. They convinced the radiology team to let us use the adult MRI machine, because it was directly underneath the paediatric OR’s, and they wouldn’t need to transport Mikaere across the hospital unconscious (something that is quite frowned upon). They convinced both teams to be free on the same morning, and to bump Mikaere’s procedure to first thing to reduce the waiting time and the time Mikaere would be under.

The anaesthetists suggested a loophole to fasting – which we trialled beforehand. Just to see how Mikaere would react to a stomach full of dioralyte with his caustic medications instead of food (because we know he doesn’t tolerate them on an empty stomach, and if he doesn’t have them we run the risk of seizure comas, which is the opposite of what we want to happen when he’s under an anaesthetic). We went into hospital a day before the surgery was scheduled to make sure the fasting went without a hitch. And if it didn’t they had the back up plan of IV meds, ordered in especially for Mikaere at great cost.

It took several months of planning, cajoling and begging to line up all the dots, and we finally finally finally got the go ahead.

And so, we were in hospital. Waiting for our gastrostomy.

Except (there was always going to be an except, right?) – it’s the middle of winter, and kids all across the country are having a tough time breathing. There was not a single intensive care bed free for after the surgery. Because Mikaere is likely to have difficulty coming off the ventilator, he needed a PICU bed. And with no PICU bed, there could be no surgery. And there was not a PICU bed available. (Well… that’s a bit of a lie. There was a PICU bed, but it was needed for a child with a malignant brain tumour. I think it’s absolutely right that child got the bed rather us, with our elective surgery).

To hammer home how slammed intensive care is at the moment, we were told they just sent a child down to South Hampton (an hour and a half away…) to the last intensive care bed they had. The next closest intensive care bed available for kids was Nottingham. NOTTINGHAM. It is unbelievable how slammed the paediatric intensive care is right now (and how horrifically underfunded the NHS is that no centre can afford to open up a unit with more beds).

So. No gastrostomy. Our anaesthetist was so frustrated about the lack of intensive care bed spaces. It’s a real problem, hey. I didn’t even know. For me… I was a bit sad and quite a lot relieved. Sam and I had to have one of *those* conversations before the procedure. We sat in the dark by Mikaere’s hospital bedside and had one of those Quality of Life discussions. There is the real possibility that Mikaere won’t make it off the vent after going under an anaesthetic. One of the decisions we have to make was how long do we allow Mikaere to stay on a ventilator without waking up before we try extubate. It’s a very scary decision to have to make, and sitting in the dark I really didn’t want to make it. I still don’t want to make it, not really. Trying to make a decision of letting go is tough.

Call me silly, but I’m grateful we don’t have to make that decision right this minute. That we’ve got a small reprieve away from risks and quality and the medical everything. We’ll tackle it all when it comes.

Dec 06
1

On the eye test

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We’ve never been sure exactly what Kai can see. It sounds crazy, really, but when you meet him it becomes pretty clear. He doesn’t meet your gaze. There is no eye contact. And it’s not like he’s aware of you and is actively avoiding your gaze, it’s that we think he can’t see all that well.

Cortical vision blindness, is what it’s called. Where there isn’t anything really wrong with his eyes, but something wrong with his brain. We knew this already – when we were in NICU we knew the toxic levels of glycine were already causing damage to his brain. The MRI was bittersweet. Structurally, all the parts where there. Unfortunately some parts had damage. Womp.

The older he gets the more clear it is. Kai doesn’t focus on things. And when he did start fixing on things, he didn’t follow them with his eyes if they moved. Or, maybe he does? The tricky thing is we know his hearing is bang on. If you make any kind of noise, he’ll turn his head towards you, and his eyes will seek you out. Our ophthalmologist thinks his ears are over compensating for his eyes. It’s crazy. So while we think he’s following with his eyes, he’s actually following with his ears.

Here’s what we do know – Kai can see light. If you flick a light on or off he reacts. So that’s nice. I’m pretty sure he can see movement, too.

But the rest of it? We don’t know really. But we do want to know, as does our neurologist and our ophthalmologist.

So we took Kai out to a fancy eye hospital in East London and had two eye tests done at the electrophysiology department. One was to check if his retina was detecting light (called an Electroretinogram, or ERG) and one was to see if his optic nerve was receiving any signals (called Visual Evoked Potential, or a VEP).

And this is all well and fine. Except that Kai had a seizure right before we walked in to the appointment. Poor little guy. Usually he’d sleep it off as his brain recovered. We’re lucky that the ERP could be done while he was asleep.

Awkwardly, it did mean I held his eyelids open for part of the test.

We had to wake him up for the second part of the test, the VEP. I felt so horrid, but it had taken forever for us to even get this appointment (I hate that I’m still quietly trying to justify it to myself now). So we woke him with a dance party – there were things stuck to his face and head and we kept him awake and flashed lights in his eyes. I can only imagine how terrible that was if all you want to do is sleep.

Le sigh. I was glad when we were done. It took a while for the results to come back, but long story short there is nothing wrong with his retinas. The VEP looks promising, but it’s hard to tell because the post-ictal stage interfered with how Kai’s brain was working and the readings they received.

So in a few months we’ll have to go back and do it again. Fingers crossed less seizures this time.

With all the electrodes...

Nov 17
0

On managing bronchiolitis

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We’re at home, which is more comfortable for Kai (and generally just better for everyone). We’ve battened down the hatches and are holding fort against bronchiolitis- its hard work hey.

I’ve cancelled all Kai’s appointments (six across four days not including the nurse visits. I’m gutted because some were so difficult to arrange!!) and it’s just me with my full focus on Kai. I literally haven’t left the house since we got back from the hospital. I designed and printed our own observation sheets and we do them mostly every hour. The benefits of design skill, hey? Mostly so I can see at a glance how Kai’s doing, and fend off anything before it happens. He’s managing, but it’s clear it’s a struggle. Poor little guy.

Kai requires regular suctioning out his nose and mouth, which is horrid for us both. It’s literally me suctioning the goopy flem out from his nose and the back of his throat. It’s thick and horrid and watching it go down the tube makes me want to gag. But Kai always breathes better after, so we do it. Not too often because we don’t want his body to go into overdrive and make more, just when he’s struggling. It’s pretty gross – but hey ho. The things we do.

We haven’t needed oxygen yet (thank goodness) but his temp keeps going up, and when it does his heart rate and respiratory rate skyrocket. I’m trying to manage it with Calpol (the magic drug for babies) but watching the fever bounce up and down makes me feel like I’m in a never-ending loop.

Observations, meds, chest percussions, feeds, suction, nappy change, seizures.

 

The consultant said it would be about five days of unpleasantness, with the worst of it being Day two/three (meaning today…. awesome). I know this is standard for special needs kids. I know it is. But it’s my first time through this particular rodeo – last time I let them convince me we should be on the ward (bad call). It’s hard work, and I do it because I love Kai (obvs) but also because I can’t not.

However the idea that we’ll be experiencing this on and off all winter long for all the years that Kai is with us? It’s like staring into a tunnel with no light at the end. I hate this. I hate that Kai is suffering, that he’ll forever be medically fragile. That anytime anyone is sick, they could pass it on to Kai and we’ll be right back here.

That, logically, it’s likely that these chest infections are what will bring about the end. From what we can tell, the end in kids with NKH is typically caused by respiratory issues. And for every chest infection Kai gets, the weaker his chest will become until one day he won’t be able to breathe. I hate the idea. I loathe it.

So while I’m here giving it my all, to help stave off this stupid stupid cold – I can’t help but feel like we’re edging towards the inevitable. And then I realise how overwhelming my fear is. My child has a terminal disorder, and I have The Fear. I hate this. NKH can suck it.

 

Nov 15
0

On the first hospital visit of flu season

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I’m not fighting with the registrar, exactly. We’re in A&E (of course we are – the start of flu season? We were bound to end up here eventually). It was a pretty typical lead up. Kai was working hard to just breathing and his chest was crackly. I’d been monitoring his o2 (92 – 95%, so slightly low), his heart rate (slightly fast), his respiratory rate (also fast) and his temp (37.9 – low grade fever).

Kai’s sick. Probably something like bronchiolitis.

I rang the nurses because I’d been oral suctioning after each cough. Not too often, because I didn’t want to increase his secretions. Just when he was having a tough time. What I wanted was a nurse to come do a nasal/trach suction (where they put a catheter down Kai’s nose and suction out the mucus he was having trouble shifting). I’d never done one and wasn’t about to do one maverick style now. Except that our nurses are a cautious bunch and instead of coming to do a suction, they were concerned with his o2 levels and suggested we take Kai to A&E.

While I’m always dubious of a ‘just in case’ hospital visit (dealing with the fear our team has and unnecessary escalation) I was keen at least to get swabs done to find out what was going on. So off we went. Kai rather magnificently timed a seizure which moved us from triage to majors (as always) and there we settled in.

Bloods, some suctioning, general monitoring – and yes, suspected broncolitis.

 

Now here’s where my polite but firm mama bear insistence comes in. They very politely told us that Kai’s white cell count is high and wanted to admit us, just for observation. We’d do repeat bloods and hopefully get discharged the next morning. It took a moment to absorb but when my brain finally kicked in here’s where it went:

  1. We only did bloods because Kai’s regular blood work is due. Not because they regularly do bloods with bronciolitis or with Kai’s general presentation/breathing concerns.
  2. White cell blood count could be high because of the elevated number of seizures (increased because: Kai is poorly) or because of bacterial infection.
  3. If it’s seizures, the white cell count will not go down tomorrow. Meaning they just want to watch Kai, just in case and we’ll be in the same position 12 hours from now.
  4. If it is a bacterial thing, the swabs will tell us. And the treatment is antibiotics, we have bottles at home for this very reason.
  5. We also have suction, o2 tanks and a stat monitor to manage symptoms.
  6. If we are admitted, Kai, as vulnerable as he is, is more likely to catch something else while we are here. Something worse, is my fear.
  7. The risk of sending us home is if Kai deteriorates rapidly overnight. The peak of bronciolitis is day two/three. So tomorrow and the day after.
  8. If Kai does deteriorate rapidly, we’re a short blue light ride from hospital but…
  9. Kai has a terminal disorder. We decided early on not to put Kai through extreme or invasive procedures to extend his life unnecessarily. So if we’re being rushed to hospital… there’s not much more they would do there than we would at home. IV Fluids, maybe. But IV Fluids in the face of a severe deterioration…

So. There is nothing they can do in hospital we can’t do at home. If we have clear parameters, we can come back if we need to. If we need to come back, it will be because Kai is very very poorly. The benefits of home outweigh the risks of leaving. I’ve talked to two registrars. We’re waiting on the consultant. I feel like we’re in here for just in case. The fear of the worst, really. Not because we need to be here.

I’m hoping we can go home. I essentially bought him in for nasal suctioning and the swab. I’ve already asked for an o2 plan and nasal/trach suction training.

We’ll see. Settling in and waiting for someone else to tell us we can go home is nails-on-blackboard mind numbing.

Fingers crossed.

Update: Took two hours but we’ve been discharged out of A&E and are going home, NOT up to the ward. We have some very clear parameters for what do and when, and for when to call an ambulance and go back. Which is to say, we got an O2 plan, and I got a run down on how to do nasal/trach suctioning. YES!

Here is the plan:

  • If Kai’s o2 stats drop anywhere near 92% we start o2, starting at 0.2L and go up as needed.
  • If his stats don’t go up, or Kai changes colour, we call an ambulance and blue light in.
  • If Kai has a fever we try calpol, and escalate to ibuprofen if need be.  If his temp doesn’t go down we try antibiotics and call the CCNs who no doubt will tell us to blue light it in.
  • If Kai is having a really rough time (increased heart rate or respiratory rate) and it doesn’t go down with the fever, we blue light in.

But you know what? While I absolutely would rush him back to hospital the merest hint of trouble, I’m pretty sure our little guy is going to be just fine at home!

Very very very glad we left. This is better for everyone.

Nov 03
1

On the Fluoroscopy

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We were late. So so so late. Here’s the thing though, even if you’re late, if you rush and apologise profusely, even if they’ve closed down the clinic (whoops) they’ll typically try fit you in. That is, you know, if you have a complex needs child with all the medical requirements that Kai does.

Thank you, powers that be for the kindness shown by the paediatric X-ray team on the day we were late. The opened up the clinic for us, and in we went. After removing Kai’s comfy bottoms (they had metal poppers), it was a small matter of wearing a lead gown and putting the colourless, tasteless, odourless dye down Kai’s tube and doing the X-ray.

It was very clever, I had no idea how quickly things moved! You could see right away when the dye lined Kai’s stomach. From there we rolled him into his side, and it dripped into his small bowel. From there, his muscles did all the work. You could see the dye swishing from one side of his body to the next, outlining the shape of his small bowel.

Pretty fascinating. It was a fairly quick appointment to be fair. The whole routine was done in fifteen minutes, and by the time we were done, Kai had fallen asleep on the table, so I dressed him and off we went. 

The wonderful Dr Williams gave us a thumbs up – Kai’s stomach looks good, the small bowel looks good, everything apparently is working as it’s meant too.

Woohoo! 

We’ll need to wait for the next clinic and from there will be able to book in the surgery! 

There is a small part of me that is very very nervous about this. About how Kai will respond to the anesthetic and how we’ll managing fast but needing a full belly for meds and the pain (more seizures?). About whether it’s the right thing to do, about whether it will cause us more complications or whether it will just fine, making things easier for all of us. 

But then I look at his beautiful, scratched up face, and I know how much he hates the tube down his nose. 

So, we wait for the next appointment. Gastrostomy, we’re making progress towards it! 

Oct 27
0

On an accidental trial of not having a tube

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We have a community team of nurses who help with the general small things. Taking bloods, organising hospital prescriptions, giving the heads up to the on-call paediatric registrar when we have to go into A&E, and providing the NG tubes. Unfortunately, our community team is also short staffed. And they have to deal with the NHS budget, which is not as well funded as we would like it to be.

Kai pulled his tube out last Thursday, and we didn’t have any spare tubes. We were meant to see our community team on the Friday, but they cancelled. They knew we were without a tube, so I waited. I called on Saturday. And Sunday. But they were busy and I know that translates to: there are other children having a much harder time than Kai, so I waited a bit more.

Here’s the thing though – without a tube Kai had to take all his feeds and meds ORALLY.He tolerated them well, mostly.

We’d never done that before. Meds are 100% down the tube, because 1) they taste horrific and 2) because then we know exactly how much he’s getting. No need to worry about dribble, or whatever is ending up on his shirt. He tolerated them well, mostly. There was one med that burnt the skin around his face (I hate that we need to give it him at all… if it’s burning his face I hate to think it what’s doing to the inside of his belly).

There were a few projectile vomits will we were figuring things out… like when we gave meds too early in the feed (fail) or didn’t burp him as long as we should have (usually we vent via the tube) but once we got everything sorted, Kai did really really well. I enjoyed his beautiful face, free of tubes and tapes. The rash that comes with the tapes was almost healed, and he was the sweetest little guy. I love his little face and it was SO NICE to see it tube free. Seriously. Look at this face:

Except for one thing. By Monday Kai had had a good morning, and had a nap after lunch. Just like always. 

Except, then I couldn’t wake him for his afternoon feed.

And I tried, hey. I spent over an hour and a half trying to wake Kai for a feed. Everything from tickling to stripping him off and dancing (which usually almost ALWAYS works). I even put him in cold shower, just for a moment. Kai didn’t wake. He did respond, in a very lethargic, leave me alone kind of shrug way. But wakefulness. No crying. Just very lethargic sleeping.

Any NKH parent would recognise this as a big, giant red neon sign. With multiple exclamation marks. Misted with a nice cloud of fear.

I got a second opinion (it’s always best to get a second opinion when you have The Fear).  I took Kai down to see one of our neighbours, who is a paediatrician (I love our neighbours, we really lucked out). She’s lovely, and did a lot to calm my nerves.

Kai’s temp was good, his O2 stats were fine, his heartbeat was okay. He didn’t have a rash, there wasn’t anything really to be concerned about. Apart from the not waking up, thing. She did the sternum rub – which is a pain test for unconsciousness. As far as a test goes, it does have a few edge cases that mean it’s not the most accurate test, but usually, in pinch, like this, it was enough to raise concern.

Kai didn’t really respond to the painful stimulus. He kind of wriggled his eyebrows in an almost frown. I was hoping he’d wake, but no such luck. So, we were advised to go visit the A&E.

Surprisingly, that didn’t freak me out. Once I knew what we were doing, and we had a plan, I could get on board with that. I know what happens in the A&E, I have things I’m meant to do for an A&E visit, so suddenly I’d gone from the world of not knowing, into the slightly more comforting/familiar world of we’re going to the A&E.

I accepted a ride from our neighbour’s husband, and after loading everything I knew we’d need for an A&E visit off we went.  On the way I called our community nurse to let the paeds reg know we were coming.

Here’s the thing though – just as we were driving into the hospital gates, Kai started coming around. Kind of.

Oh. My. Days.

He went straight back to sleep, but it was the first sign of life I’d seen all afternoon.  We still went into the A&E (they were expecting us, so we were moved right through, no need to wait in the waiting room) and got Kai checked out. He got bloods taken, and had the consultant look him over. More importantly, while we were waiting for the blood results to come back, Kai got an NG tube put in.

Thank fuck.

Long story short, after several hours at the A&E, Kai’s bloods came back clear and we were given the thumbs up to go home. They suspect it was an issue with medication delivery, which is to say that because Kai dribbles when he eats, he wasn’t getting the full dose of medication. Because he wasn’t getting the full dose, his glycine levels were probably elevated and made him overly lethargic.

I was grateful we were able to go home, and that Kai was fine for the minute. I was furious though, that if the reason really was medication delivery – then our A&E appointment could have been avoided altogether by a less busy community team. If we’d had a spare NG tube, this wouldn’t have happened.

So, I did what any parent would do. I convinced our GP to write a private script for NG tubes and asked our pharmacy to order them in especially for us. However, because the minimum order of tubes is 100, I bought 100 NG tubes. It cost a bit under £200.

I know – I know. I know, the NHS should have provided the tubes. This shouldn’t have happened, and I shouldn’t have had to spend hundreds of pounds for something Kai needs. I know. But the reality is that we slipped through the cracks, despite my calls and emails and loud mama bear noises. The peace of mind that comes with having a huge supply of NG tubes is massive. We will never run out of tubes again, and I’m glad.

The reassurance and relief is worth it.

The other thing that’s come out of it is the confirmation that Kai can not manage without a tube. He can not manage orally. I did wonder, and I’m glad we tried but I will no long wonder. I am not keen for him to be tube free, and 100% oral anymore. I’ve seen what it does to our little guy, and he is 100% better off with a tube.

The things you learn, hey?

Either way, we were able to come home and Kai is fine now. I’m grateful that’s the case.

Aug 14
1

On another week, another hospital visit

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This time we managed about six weeks between hospital visits – some kind of record for us! It’s always the small things that get us here, which I think is why The Fear is so big.

This time Kai was grumpy. Proper unhappy, which is so unlike him. I put it down to teething. Except then he was off his feed… and then he was warm. Low-grade temp, nothing too major. We’re in the middle of summer, everyone is warm right now…. right? No one’s keen on drinking warm milk in this weather…. right? I keep trying to explain it all away, silently hoping that this isn’t a thing. Please don’t be a thing.

Except, then there was this rash. It blanched okay, so in my eyes not any of the big scary things (oh hey meningitis). I mentioned it to a doctor friend, who suggested I call our community team just in case. And then our CCN suggested a gp visit. Who suggested an A&E visit. And now we’re here. In the A&E, with all the fears of everything that came before.

Here’s the thing though – I don’t think we need to be A&E. I don’t think we’re even close to needing to be in A&E. But because Kai has Nonketotic Hyperglycinemia – he’s considered ‘complex’. And with the complexity, our medical support always wants to cover ‘all the bases’ – so they shove off responsibility onto the next escalation point. Our CCN’s point to our GP, our GP points to A&E.  It’s always “just in case” – not because Kai genuinely needs to see the GP or be in the A&E. What bothers me is this kind of mentality is not best for Kai.  Having Kai sit in a waiting room full of sick people, or sit in A&E – we open ourselves up to more colds and coughs and illnesses. Taking care of the “just in case” benefit does not weigh up against the risk of Kai getting something worse.

So. We’re in A&E unnecessarily.

Right now we’re waiting for blood results to prove Kai doesn’t need to be here. I’ve insisted on numbing cream (because apparently using pain relief is not common in under ones. Mums, if they need to take blood from you wee one, INISIT on numbing cream). We waited for the cream, we waited for it to take effect, and now we’re waiting for results. We wait. We wonder. This isn’t anything we need to worry about (……right?). We’re taking bloods, and they’ll be fine and then we can go home. We don’t need to be here….. right?

Cross your fingers we’ll be going home. (Please please please please let us be going home!)


Update:

Bloods took four hours to come back, and they don’t think it’s meningitis or encephalitis (thank goodness!!). In saying that it’s clearly some viral infection of some kind. Poor baby.

Bloods took four hours to come back, and it’s not meningitis or encephalitis (thank goodness!!). In saying that it’s clearly some viral infection of some kind. My poor baby. New question – where is he getting weird viral infections from?!

So, they offered us an observational night at the hospital. But because they know us (we’ve seen this particular paediatric registrar several times before, and our emergency paediatric nurse we’ve had several times before too… I guess knowing the medical team is the silver lining of being a regular at the A&E?) they also said they were okay for us to go home if we were comfortable with that.

It was no contest for us, we go home. We knew what to watch for, we had O2 if Kai needs it, and having Kai at home he’s less likely to catch anything that wafts through the hospital. So home we went. I feel like we’ve dodged a bullet.  I’m so so so grateful we didn’t stay overnight. Hurrah!! Kai is still not himself, but fingers crossed he recovers soon.