Tag

illness

Oct 29
1

On being in the A&E

By | #teammikaere | 2 Comments

Mikaere’s had the once over by several people. His nurses have taken bloods, he’s had a nebuliser and is on o2. His gas and air look good (his lactates especially), his temp is holding steady and we had a visit from a PICU Nurse we know who came in to say hey.

So no red giant flags, and I have a chance between consultants to go get breakfast.

And as I’m walking down the familiar halls to M&S I think Saturdays are the best days to be here. There are less people in the hospital today. We had the bonus of coming in early, just after the shift change but before all the other kids had enough time to hurt themselves and fill up the a&e waiting room.

Is it weird that I think all this? That I know the time shift change happens? That I know when the lulls and peaks of our a&e are? That I come armed with a cheat sheet that answers 99% of the nurses/drs questions, and the two questions I’m asked (what is blood test for glycine on the system as – amino acid blood profile – and what colour is the bottle – green) – I can answer without really thinking about.

Our last a&e visit was months ago. MONTHS ago. I guess this is the winter season kicking off, right after a week of appointments and therapies after the summer break. I’m not happy we’re here, but now that we are I’m not panicking about it, too much. I’m hopefully we’ll make it home this afternoon sometime.

—-

A few hours later and I’m worried. We’re still in the A&E majors, Mikaere’s still on o2 and sleeping, but he’s not holding his o2 levels above 92%. We need 94% or higher. We up the rate to 1L. That’s the borderline dose. It’s not a super high dose of o2… but any higher and we’re staying over.

The nurse notes say they’ve booked a bed upstairs on the ward (just in case) and I’m positive that if this was any other kid, or if I hadn’t expressed my concerns about the risks of being on the ward we’d be up there already for observation rather than down here. But down here is safer. Down here the A&E majors is filled with broken bones and a girl with ENT drama. There are no other chest infections or mystery illnesses in our room. The ward I know is probably filled with more things that pose a risk.

So we wait, we see. The idea is that the longer on o2 he is the easier it’ll be for him. His body won’t have to work so hard, he’ll have more in the tank for recovery. Or so we hope.

I’m worried though. I don’t want to go up to the ward. That’s the start of the path towards deterioration and I’m scared that each escalation will mean a step toward terminal.

But we’re not there yet. We’re not. We’re just in A&E still, just in observation. We’ll see.

—-

The bloods are back. The chest xray clear. But Dr Erin has a game plan. She called our apartment a mini hospital. We have suction, a stat monitor and oxygen. We have all the medical equipment that Mikaere’s currently making use of on A&E.

I think that’s our saving grace. Kai’s just barely managing to keep his stats up with o2, and we’re able to wean to 0.5L when he’s awake. It’s a small wean, but it’s enough. We’re  discharged with very strict instructions of what to look for and when to come back. We have nurses calling to check in, and with a discharge note we’re waved off.

Mikaere’s not any better than he was this morning, but he’s not any worse. I was right to put him on o2 it turns out + I’m grateful for the reassurance.

Kai’s ill. He’s not holding his o2 levels up by himself. But we’re home. Thank fuck for that.

Oct 26
0

On the first hospital visit of the season

By | #teammikaere | No Comments

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 12
0

On the developmental quotient

By | #teammikaere | No Comments

One of the things newly diagnosed NKH parents worry about is severity. There is a range: Severe is at one end. Severe means that neither mutation is producing any protein that can be used by the body. Any protein that is made is probably unstable and falls apart to be recycled. Severe is what we’re primed for – disabled, seizures, developmental delay, early death. No walking, no talking, not eating. Perhaps smiling – a developmental milestone usually hit in the first few weeks – that’s the total brain development we’re told to expect of a severe child.

At the other end, there’s attenuated – that’s a whole different kettle of fish. Some children you wouldn’t even know have NKH. They’re walking and talking and going to school and are picture perfect (I met a boy who had very mild NKH in March. I literally couldn’t stop staring. I wanted to hug him, but as a stranger to this teenage boy, I refrained). It steps down in degree’s from there. Walking and running (or sometimes non-mobile) and/or talking up a storm (or non-verbal) and/or eating (or bolus only). There are a lot of other issues, too. ADHD, severe behavioural tantrums, autistic like behaviours, hyperactivity movement disorders (dystonia, chorea, ataxia).

As I understand it, it’s a huge range split across three categories: Attenuated Poor. Attenuated Intermediate. Attenuated Mild. You can’t tell which category is which until the child is much older (around 2), and they’re showing signs of development. The rate at which they develop – thats what defines which category you’re lumped in.

What this means first and foremost is that at the time of diagnosis (typically a few weeks after birth) it’s impossible to tell severe or attenuated, unless your child has two of the handful of mutations which have previously been expressed to show how much protein they produce. Regardless of this almost every parent is told their child is severe. If a doctor see’s your child as sleepy and lethargic (even if it’s just a bad day, or post seizure) they’ll lean towards severe. Severe is where we’re primed to be, and severe is what we fear in that newly diagnosed haze. Severe is the safe worst case scenario.

Thing is, it isn’t until our babes start developing that the severity of NKH comes to light.

There’s a slide in a talk done by one the NKH researchers that spits it out:

Attenuated Mild: Developmental Quotient 50-80
Attenuated Intermediate: Developmental Quotient 20-50
Attenuated Poor: Developmental Quotient <20

The Developmental Quotient is a score – it’s the developmental age divided by the chronological age. As the parent of a developmentally delayed child – that’s a scary score. In my ignorance, I know Mikaere’s delayed, but I don’t know *how* delayed. Very seems nice ambiguous score. I know he’s not even close to his peers, and he’s been passed by babies a year and a half younger than him, but there’s nothing concrete to latch on to.

And that was fine until in Boston I spoke to researcher, showed him a few videos of Mikaere and after a pause, he said Mikaere was unlikely to be severe, he was showing milestones that perhaps put him in the attenuated poor category. This same researcher had seen Mikaere a year before and had said without a doubt he was severe at his current presentation.

Attenuated Poor. That shocked me. What would attenuated poor mean for us? Would it mean more time with Mikaere? What would our future look like? Will I (dare I even hope) need to be looking at support and facilities and special needs schools? (Will we make that it that long?) – what kind of support will we need? Will we make it to the world of special needs vans and hoists and support with a teenage Mikaere (Can you even IMAGINE?!) Attenuated Poor threw me off my severe, live in the short term kind of mentality. What would attenuated poor mean for us as a family?

How do we make quality of life decisions for our family with such uncertainty in our future? You can see the kind of emotional mess my brain went to with the words ‘attenuated poor’.

But I’m also kind of a logical person, so my first port of call was can we confirm that Mikaere is, or isn’t right now, on the attenuated poor scale? Which is where that Developmental Quotient came in. It would tell me. There is a standardised test and a score and NUMBERS. I never wanted to know how delayed Mikaere was before and now it was all I could do to not do the test myself.

In the studies that discuss NKH Severity, there are three scales of development that could be used: the Bayley Scales of Infant Development, Mullen Scales of Early Learning, or Wechsler Scale of Intelligence. The Bayley Scales is the typical standardised measurement in the UK, and our physio was trained in assessment. So off we went. She came and Mikaere was assessed.

It’s heartbreaking to look at the long list of milestones by age and know your baby can’t do the majority of them. What a knock. Still, I cheered for everything Mikaere could do. We marked off some milestones, which is positive (he’s on the scale, you know?) and just – we got through. I had to remind myself that MIkaere hadn’t changed. Mikaere was still his happy little self and he couldn’t do anymore or any less than he was yesterday. He’s still just fine on his own little path.

Deep breath in. Slow breath out.

We got through the assessment and I put it out of my mind until the assessment report came.

Cognitive: Age equivalent: 3 months.
Language Receptive: Age equivalent: 3 months 10 days.
Language Expressive: Age equivalent: 6 months.
Motor Fine: Age equivalent: 2 months
Motor Gross: Age equivalent: <16 days

Mikaere was 21 months when we did the assessment with an average development of about 3 months. Oh my heart.

DQ Final Score: 3/21= 0.14 or 14%

But there we go. The numbers are pretty clear. Mikaere’s solidly in the Attenuated Poor Category.

Aug 03
0

On more vomits and our magic osteos

By | #teammikaere | No Comments

After my victorious post about Mikaere putting on weight… I’ve had to retract all that joy and positive forward momentum. As of this morning, Mikaere is 10.37kg. Which is to say, he’s the same weight he was three months ago. Except that now he’s longer, and he’s lost all of his beautiful baby chubb. You wouldn’t know it to look at him – he looks so well. Like a happy little boy. Except that most people don’t see him without his clothes on. You can’t see his ribcage or the way his little vertebrae stick out.  Now, just to clarify, he is underweight, but he’s not in emergency, dire situations. We’re sitting at about the 20th percentile.

Even more relevant, is that we know *why* he’s not putting on weight, and it’s because he can’t keep food down. Oh the vomiting. The vooooommmiting. It’s everywhere, all the time.

Here’s the thing. Mikaere has a not-cold. He’s not really ill, he doesn’t have a chest cold or a temperature or a touch. What he has are secretions. From teething, maybe? From life? And every time he can’t handle a secretion he vomits. His body and his stomach is so sensitive. I spent a long time talking to our osteo about the structure of the stomach.

I’ve said it before and I’ll say it again – here is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophageal reflux (aka, vomiting because of the gastro – source) so for everyone due to get a gastro – you’ve been warned. Asked for a hitch with a low curvature and make your surgeon agree.

I’m positive that because Mikaere’s stomach has been hitched high to his abdominal wall, this has pulled his stomach up at an unnatural angle, changing the way food sits in his belly and puts pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in. The outcome of this is that he’s a trigger-happy projectile vomiter now. All the time, everywhere. In the buggy, the car seat, the crib. Sitting up, or down or side lying. Moving, not moving. On the blended diet, formula or dioralyte.

I thought we were getting somewhere with reducing the frequency of his feeds and the rate at which we feed him, but now we’re going even slower, because fuck. The vomiting. I thought we were on the up but I was wrong. Womp.

Anyway, like I said, we see an Osteopath every week thanks to the amazing charity Osteopathic Centre For Children. Side note: Osteo is essentially concerned with the mechanical arrangements/movements in the body, particularly in terms of alignment. They do a lot of soft tissues massage and joint manipulation, though to be honest, sometimes it literally just looks like they lay their hands on Mikaere and close their eyes. We see the same therapist every week and every visit in the few weeks has included a projectile vomit. It’s so so horrid.

But this week, this week Stuart was in the clinic. He’s the director of the Foundation for Paediatric Osteopathy and is essentially one of UKs leading osteopaths. Stuart is essentially magic. He came to see Mikaere and we talked about the vomiting. Leading an additional two osteos, they did their hand laying/eyes closed trick and talked about medical terms (the sacrum, the vagus nerve etc. They later translated to say Mikaere’s insides were a bit twisted around the hitch, which caused his body to work a bit like a spring. They were trying to untwist all the things).

I’m hopeful, as always. I wasn’t convinced they were going to stop the vomiting, but Mikaere enjoys osteo, he always relaxes and they’re not doing any harm.

Oh, silly disbeliever me. After his appointment, we went FOUR DAYS without a vomit.  Considering we had normalised at to 2-3 vomits a day, four days of not changing sheets or cleaning carpets or multiple baths – what a relief. You can be sure I showed up the next week with a ‘more please’.

After every visit, we’re seeing longer and longer vomit free times. I don’t fully understand it, but I’m grateful. Mikaere is not yet back up to where he was, weight wise, but if he can keep food down it’ll start, right?

Magic Osteo’s. Definitely recommend.

Jul 28
2

On cancelling

By | #teammikaere | No Comments

Ahhh. Before Mikaere I couldn’t understand people who flaked. People who would agree to a time and date and event and just not show or would make excuses or whatever – I really struggled to empathise. As a person, I might be late but I prioritise getting there. If I say I’m going to be there, I am.

Today Mikaere and I were set to see a friend and her sweet 6 month old baby. It had taken us month to pin down a date and it was going to be in a lovely pub with a beer garden and the weather forecast was set to perfect. Except that just before 7am we were woken by our night nurse. Mikaere had a temperature. His chest was junky. He had a cold.

Womp. Wooooooooooooommmmppp. The offshoot of this is the more seizures he has as his body attempts to fight it off. Which has the delightful second effect of more vomits as he can’t handle the secretions when seizing. So much vomit.

I hate this. Was it because we were at the hospital yesterday? Because we had friends with kids over for dinner? Was it the small boy who made a beeline for Mikaere’s buggy and touched him before anyone could stop him? Was it someone at Sam’s work? Was it a stranger while we were on one of our walks?  Was it because I’ve been a bit more lax with the sterilising? That I just washed his spoons in soapy water and didn’t run them through the steriliser? I did say recently that it would be nice to build up Mikaere’s immune system a bit more, do less sterilising, have him hang out with more kids…

I’d forgotten how hard colds are Mikaere. So I take that all back, fuck building an immune system if it’s going to be so difficult for Mikaere to fight through.

I hate this. I hate that he’s sick. Hate that we’re constantly cancelling (I’m so, so sorry to everyone we’ve cancelled on, and I’m so grateful for your understanding and grace). I hate that my boy struggles so. Mostly I hate NKH. Positively loathe it. (So much so that I put it on a t-shirt and I wear it frequently).

Hopefully this cold will roll on by in the next day or two, but we’re battening down the hatches till it’s on it’s way. Send us immune-boasting-get-better thoughts.

Apr 27
1

Update on the button + vomit

By | #teammikaere | No Comments

Before Mikaere had his surgery, I spoke to anyone and everyone whose child has had a gastrostomy. They all said the same thing – it was game changing for their child. And while there was a lot of positives, I was unprepared for the epic amounts of vomit.

Before the gastro Mikaere never vomited. If he did, it was very very rarely and only ever when he was ill. Now? Now I have vomit in my hair most days. I have buckets of things soaking in my bathtub to get out the vomit stains. My carpet smells of vomit. My washing machine is on an endless cycle of things that are covered in vomit. My clothes. Mikaere’s clothes. Sheets, muslins, blankets, couch covers. Today Mikaere even managed to vomit over the recycling bag, getting (and I kid you not because I had to sort it) every single piece of recycling we had covered in vomit.

Vomit rules our lives right now. Please hold off on the advice giving – we’ve done everything. Reduced the feeds, slowed the feeds, spread them out over the day. It doesn’t matter whether it’s blended food or formula or dieralyte or even just plain water. Gaviscon can suck it. He’s already on omprezole. He’s always upright when we feed him, either reclined or in supported seating. It’s not directly after a feed, it’s about 2-3 hours after. I’m not going to consider a fundo (like I said – I’m not looking for all the advice here. I’m just telling you where we are right now. Yes, we’ve talked to the surgeon, our paediatrician, our gp and all our nurses know).

We think it’s because of the gastrostomy. With the way his stomach has been hitched to the abdominal wall, which means food goes in, and is forced (because of the way the stomach is slanted) straight into the top of his intestines. This has changed the way he feels when he has food in his belly and because of how his stomach is pulled (unnaturally up towards his abdomen) it’s put pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in.

There is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophical reflux (aka, vomiting because of the gastro – source) so for everyone due to get a gastro – you’ve been warned. Asked for a hitch with a low curvature and make your surgeon agree.

In the meantime, I’m at a loss. I don’t know if this is going to be a forever thing (I desperately hope it’s not) or whether as his body acclimatises to the new stomach position and the stress on his oesophagus he’ll be able to hold food down.

Blah is how I feel about this. Blah and heartbroken for Kai who hates vomiting. With a passion and cries his little heart out when it happens. It’s heartbreaking.

Stupid vomit. We’re over it.

Nov 28
0

On the end is in sight, but the cost has been painful

By | #teammikaere | No Comments

Kai’s fever finally broke over the weekend. Hallelujah! He’s still not 100%, but we’re out of the worst of it. With the fever gone Kai’s been able to hold his own 02 levels, his heart rate is down and his respiratory rate has returned to normal. Which means he’s not working as hard to breathe – thank goodness for that! He still has the crazy chest crackles, and the mucous vomits are still a thing, but we’re on the tail end.

While I’m grateful the end of this stupid virus is in sight, it’s hard to see the decline. Kai has backslid developmentally. The seizures and illness has really knocked his body for six and he’s paying the price.

It’s heartbreaking to see. Is it too brutal to list all the changes?

  1. Kai has lost his suck – which means he’s not even bottle fed right now. From taking purées orally to formula only through the tube… that’s hard to see. I thought we’d left the pump behind, but we haven’t.
  2. He’s no longer chatty, there are no more little squawks or happy giggles. Kai vocalises only when he’s upset, which is heartbreaking. I miss his happy little chirps.
  3. He’s lost his tone. No big motor movements to hit the bells, Kai’s stopped exploring with his arms, he’s stopped kicking.  No more head holding. No more trunk support. Just a super floppy little baby, back to newborn like tone.
  4. The seizures. Oh my days the seizures. They’re longer, more frequent and more violent. More tears, more pain.
  5. The dystonia movements. They’re new and not good, I don’t think. Dystonia is a neurological movement disorder – where Kai’s hands and arms and wrists contract over and over again, pulling his arms and hands into an abnormal fixed position. It’s horrific to watch. It’s something to do with his nervous system over reacting, all the time. Very startle-y, very twitchy.

All of this came from “just” a cold. Something you might get sniffles for, and brush off. No big deal. Except it’s a huge big deal for us. My kid went from eating to not eating and being 100% tube fed. He went from being aware and curious about the world to a sad little shell of himself. This is what happens when you touch a medically fragile child without washing your hands.  Always, always wash your hands. Always.

There is this other thing I’m struggling with… The dystonia pulls Kai’s hands into odd positions. For the first time (to my eyes), Kai looks truly disabled. Before the dystonia, if Kai was hanging out in his buggy, tube aside you wouldn’t know he was ill. He’s not a wheelchair, he’s not drooling or teeth grinding and his eyes don’t look out at odd directions. He was just a beautiful little boy.  Strangers would stop us at street lights or in supermarkets to comment about what a handful he must be, or how well behaved he is. And I think I found comfort in it, that while I know he had NKH and intellectually I was onboard, my child didn’t look disabled.

Kai looks disabled now. And I know it means nothing, that that nothing has changed in Kai’s world and I still love him like nothing else, dealing with other peoples view of him has been difficult. The pause as his therapists take in the changes,  the lady in the supermarket who wanted to smile at a cute baby, but after seeing Kai looked away and avoided my gaze, the little girl who asked her mother quite clearly ‘Whats wrong with that baby?’ and her mother telling her not to ask questions.

I feel like I’m grieving Kai all over again.

And I know, I know the skills might come back. I know. I know that once he’s fully back up to full health it might all be different, and the dystonia might go away and he might recover his suck and we can back to trying foods orally.

But it’s hard to watch now and not feel guilty. And wonder whether if I’d been more strict about being in the bubble, if we hadn’t gone to the children’s groups or the playground, or if I’d put his buggy raincover on while we were in the hospital waiting room… whether he might not have caught anything. And might be moving forward, rather than backsliding.

Honestly, I’m trying to be kind to myself but the guilt is overwhelming. Cold and flu season, hey? It’s horrid. Please can it just be April already.  Let’s skip winter.

Nov 22
0

On Going into Day Ten

By | #teammikaere | No Comments

We’re now on Day 10 of this horrid virus. Ten days of suctioning, fever checking, horrific seizures, little to no sleep, housebound and one very sad little guy.

Here is what I want to nail home today: Kai has enterovirus – that’s what is causing the bronchiolitis.

Enterovirus is shared person to person by DIRECT contact. Which means that someone touched Kai without washing their hands first.

Sam and I are pretty religious about hand washing. If we’ve been out, before we touch anything we wash our hands. Before we touch Kai we wash our hands. Frequently throughout the day, we wash our hands and use antiseptic hand gel. Just because.

We are religious about this. For ourselves and for Kai. Our nurses and therapists are pretty good when they come in, and before handling or after nappy changes or anything that requires some sterility, like meds or suctioning.

But here is what I’m kicking myself over. Whenever we see anyone out and about, their instinct is to touch Kai. His hand, or his foot. He’s a beautiful baby and so many people just want to love on him.

And selfishly, I want them to love on him too. The more people that love on him the more impact he has on his little world (this still stems from The Fear of the inevitable, I’m sure of it).

But thinking back to two weeks ago when we were out and about at appointments and play dates and in the playground… when we had therapists and cleaners and workmen through our home, when we went to play sessions at the children’s centre…

When we were living life because I wanted to be a tiny bit more relaxed about the bubble we were living in now that Kai was a bit older.

Someone who probably didn’t even know they were infected touched Kai and now he’s suffering big time.

Oh my days the guilt I have. If I had been super strict about the bubble, would Kai still be ill? Would he be suffering right now?

Who knows. I hate that he’s ill, and there’s no magic anything to help. Even calpol isn’t working as well as we’d like.

Worse is the fear that he’s backsliding developmentally. Gone are the chats, sucking is gone, as is any large motor movement exploration. Sigh. I hate this. I hate that he’s so sick from what would be a cold and a runny nose in anyone else.

Please take this away: if you haven’t washed your hands, please don’t touch medically fragile children. Please just don’t.

Nov 20
0

On still waiting for the corner to turn

By | #teammikaere | No Comments

This past week has been tough. I’m going cabin crazy, but couldn’t possibly leave. I’m sleep deprived, on edge and the whole house is emotional right now.

Kai is still sick. The 3-5 days thing was bs. We’re doing NKH bronchiolitis- the kind that’s never ending, the dig deep marathon kind of ill. I’m over the fever spikes and mucus vomits and the suctioning. We even had to start oxygen yesterday, for a bit when Kai couldn’t manage to hold his own o2 levels.

Also, Kai is having crazy seizures. We’ve gone from 10-25 seconds to a minute and a half seizures. What was maybe two or three a day last week is now twelve a day, minimum.

And they’re violent. Kai is now very aware of them and will cry in the middle before he’s swept along with the shaking and jerking and tense horrid all of it. It stops when his brain can’t handle anymore and it konks out.

And as I’m holding his little body and crooning to him I’m crying too. Watching him suffer is tough. Everything comes second right now. I haven’t showered and my flat is a bombsite and breakfast happened way past lunch time… I’m too focused on Kai. Too consumed by his pain to do anything more than be right next time him.

I spend my down time googling more epilepsy research. More about seizures and what else can we do? We already listen to Mozart K448. He’s already on DHA (thanks Omega 3).

Neurofeedback is our next thing. I hope, with a longing I can’t even explain, that it helps his seizures. (Again thank you to everyone who has donated. If you’d like to donate to therapy for Kai you can do so at justgiving.com/crowdfunding/help-for-kai )

But while we’re looking for the next thing that will help Kai, I can’t help but feel we’re fighting symptom fires and not the cause.

I hate NKH, so much. It’s horrid. Come on UCL researchers. We’re cheering you on. You can do it. Make gene therapy work for NKH. Please.

Nov 17
0

On managing bronchiolitis

By | #teammikaere | No Comments

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.