Tag

wellness

Sep 28
1

On the eye gouge

By | #teammikaere | No Comments

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.

Sep 24
1

On vision

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In the last few months Mikare’s vision has become more… pronounced? He’s able to see more, he’s LOOKING at more. Before he was quite… disengaged? Is that the word? It was as if he was using his ears to ‘see’ rather than eyes. It was hard to tell what he’d react to, because he doesn’t stare really. It’s hard to tell if he’s focusing or not. His head is constantly moving, so there’s no prolonged looking in one direction. But small things would give it away, like Mikaere wasn’t really able to see you unless you were right next to him.

We did lots to help his vision – namely large black and white cards were up everywhere – in his crib, by his changing matt, in the buggy. I’d put “CVI” into the search box on youtube on an iPad and put it in his crib (I liked this one best). We’d hang black and white toys from a microphone stand to dangle above his head. We move objects with lights or bright colours slowly into his field of vision and across to the other side in the hope he’ll track. We even got referred to the local Vision Support team, who started working with Mikaere every two weeks.

I can’t say for sure any of that helped – for a long time it felt like we were doing the same things over and over with little to no progress. The problem is that we didn’t know what Mikaere could and couldn’t see. We knew from the eye test that there is nothing wrong with his eyes. We knew Mikaere could see some things, but what? We don’t know. If we don’t have a baseline, how do we know it’s improving? Do we keep going? Do we stop? Does it make any difference at all?

And then we had a period with little to no seizures, no illness and something shifted slightly. It wasn’t a sudden change, it was gradual thing, like noticing Mikaere turn his head if someone moved down the other end of the room. He might point his head at an object, turn away and then batt at the exact right position with his hand.

Our therapists (who had the benefit of distance) started commenting how much aware he seemed. He began doing things like opening his mouth in anticipation of food, or turning his head when he didn’t want to eat what we were offering. Turning his head much more. He’d cry and stop when we approached him. Small things.

We’re still not clear what he can see, and Mikaere doesn’t stare, or track the same way we do. He won’t look and reach at an object at the same time, but there is some visual mapping happening.

We still don’t know what he can or can’t see, but there’s a definite improvement, and that’s something.

Aug 08
1

On reusables vs disposables with tube feeds

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When we finally left the hospital and Sam and I were finally able to parent, one of the first things I did was switch to reusable nappies. We used baby genius freetimes and they are AMAZING. As convenient as disposables and easier to manage (mainly because I never had to leave the house for nappies, all I had to do was a load of laundry). Overall I felt pretty smug that we were doing great things for the environment and that our nappies weren’t ending up in a landfill.

Except that now we have the gtube, we’ve changed his feed a bit (high five for the blended diet) and increased his fluids as appropriate and woah buddy.

The intake outtake has been ridiculous. I can’t keep up, not with liners, not with anything. The nappies were leaking. Leaking doesn’t even seem like the appropriate word – it was like every half hour Kai was DRENCHED, requiring a bath and full outfit change, and washing whatever he was lying on. I can’t tell you how many times a day I was stripping the crib and washing the sheets. I got to be an expert in washing the car seat cover and I started putting incontinence pads down everywhere.

So we switched back to disposables. I hate myself for saying that, but we did. The all-in-ones weren’t cutting it and I didn’t want to spend a lot of money upfront of more reusables that may not suit. I’m sad I didn’t have the capacity to change the nappies every 15 minutes and the full outfit/bath/strip the crib/wash the car seat routine several times a day, but I just couldn’t.

Disposables, I don’t love them. Here’s the other thing, even now the disposables (and we’ve tried several different brands) don’t always hold up overnight. I’m considering going up a nappy size to help with the absorbency because wtf. Knowing that nappies are likely to be in our forever with Mikaere, it’s infuriating that my kid isn’t even 2 years old and with tube feeding we’re dealing with leaks all over the place. It’s even more heartbreaking that this isn’t a temporary measure – Mikaere is likely to be in nappies for his entire life – that’s A LOT of nappies in the landfill not breaking down. Le sigh. We’re currently using Naty’s. They’re apparently an eco disposable (though I’m aware this is because they are PRODUCED according to the most environmentally friendly production methods. This however has NOTHING to do with their landfill implications. Their website says parts of their nappies are biodegradable in appropriate conditions (if that’s not snake-y marketing speak then I don’t know what is). Truth is they still take forever (400+ years) to break down in a landfill.

It’s very blah. So – special needs tubie parents I want to hear your tips. What nappies are best? How are you managing with absorbency? How do I not add several nappies a day forever to the landfill while still not having to change and wash everything?

(Image throwback to baby Mikaere in our very first few days home…)

Aug 03
0

On more vomits and our magic osteos

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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.

Aug 01
1

On small wins

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Mikaere’s on two antiepileptics and a supplement to help with his seizures: Zonisamide, Phenobarbital and Omega 3 (with all of it’s fantastic DHA seizure support capabilities). Now, it turns out that phenobarbital is one of the most frequent drugs used to treat neonatal seizures, and considering Mikaere is palliative it seemed like a good choice when nothing else was working.
 
But here’s the thing, long-term use of Phenobarbital has enough studies to suggest it has a terrible effect on a developing nervous system, it has a detrimental developmental effect too (with developmental quotient declines (in both cognitive and motor skill) which are thought to reflect a slowed neurological growth rate) and causes an increase in the probability of a cerebral palsy outcome.
 
Whats more, side effects include a decreased level on consciousness (it’s essentially a sedative) and it’s addictive, causing withdrawal symptoms when weaning. Aaaaand it would make Mikaere vomit. If it wasn’t diluted and given really really slowly he would vomit immediately.
 
Also, it turns out phenobarbital is used in the lethal injection of death row inmates and also prescribed to terminally ill patients to allow them to end their life through physician-assisted suicide. Always nice to know we’ve been giving this drug to our baby twice a day for last 14 months.
 
A good 9 months ago now Mikaere’s seizures started becoming a bit more, dare I say it, under control? Mikaere started having a handful of seizure free days. At first, it was sporadic, one day here, one day there. It was amazing, so amazing to see. The fewer seizures he had, the more gains he was making. Eventually, he worked himself up to two or three day stretches. I was ecstatic, to say the least.
 
It was at this point we discussed weaning with our palliative care team. There wasn’t much harm, they said. As long as we went slowly. If there was an increase in seizures we could put the dose up, no problem. So we started a very very slow wean. Every three or four weeks, we’d reduce the dose by 2mg (which is about 0.2ml – a tiny tiny amount). We’d wait, and watch. We already track Mikaere’s seizures and I’d hold my breath waiting to see if there would be more seizures. Sometimes there would be if he had a cold or was having a tough time. Sometimes you wouldn’t have noticed the dose had dropped.
 
It felt tricky, weaning. We eventually got to a sub-therapeutic dose. We high fived that day. And today? Today, after months and months and months of tiny, incremental weans – we’ve managed to get Mikaere off phenobarbital.
 
It’s been amazing. He’s been more awake and aware, making more developmental gains. I have seen an increase in seizures if the Omega 3 is a bit old (and has oxidised) or his Zonisamide dose is later than it should be, but generally, as long as we’re on the ball he’s a happy little guy who is still having some seizure days.
 
I’m stoked to have Mikaere off one of the medications. Phenobarbital is still on our list of emergency meds, but I’m delighted we’re no longer giving it on a twice-daily basis.
 
Celebrating small wins, woohoo!
Jul 09
1

On finally putting on weight!

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Woohooo!!!!! Thank fuck – Mikaere is gaining weight again. It was scary to watch his weight fall off, the beautiful chub of his cheeks disappear, his little arms and legs get more defined. That with every vomit I knew he was losing calories, and I watched at our weekly weigh in as the numbers went down and down and down. He got to under the 20% percentile – which isn’t a huge deal. He looked healthy (everyone kept saying he he was growing up, but it was because he lost all his baby weight!) and was still alert and aware, still active. There was a reason he was vomiting (#borderlineGastroRegret) and so we were reassured by our team that it was okay.

But as a mama, it was NOT okay. There was always the fear from our dietician that if he couldn’t get his weight up a ‘nutritionally complete’ formula was in Mikaere’s future, and as someone who hates the idea of processed anything (particularly when some of the ingredients are high in glycine aaand its stored in plastic bottles – so terrible!) I went on the offensive.

The first trick was getting the vomits down – we reduced his feeds from 4 meals with three snacks to four meals period, increasing the calories and the feed time, reducing the volume. We got to three hours on/three hours off. We hadn’t been on this schedule since we were on end of life care in hospice.

We moved away from regular formula to the blended diet where I painstakingly worked out the calories of each blend, going for high calorie low volume (he eats a lot of avocado, peanut butter, coconut oil and coconut yoghurt). It’s hard work and I have spreadsheets coming out my ears but you know what? It WORKED!

Because my baby is putting on weight. There is something beautiful about all that hard work and extra effort paying off in tangible numbers. Something beautiful that is mostly epic amounts of relief.

It’s even more likely that his was putting on weight had little to do with me and more because Mikaere very gradually stopped vomiting as frequently. For every feed he kept down he gave himself a better chance of putting on weight. That’s not to say the vomits have stopped, because they haven’t. We’re still at at least a vomit a day. Sometimes too. But against the 4-5 vomits we were having? I’ll take that improvement. In fact, even yesterday he had his first vomit free day in forever, so that’s positive!

I feel like I’m on high. When he reaches the 50th percentile, I’ll reduce the calories to a more appropriate level and start adding in more nutrition. We’re not there yet but that his weight is going up? I’m pleased. So so pleased.

 

Mar 08
0

On the superstitious good things

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There’s this thing about good times. When things are good, I feel like I’m holding my breath waiting for them to be not good. Like I’m waiting for the other shoe to drop. I’m told this not uncommon when parenting a child with a progressive disorder. When you’ve been on end of life and expect to be again, any good time is by nature of NKH, temporary. A nice, tiny haven where you ache to be with every fibre of your being, knowing full well you can’t live in the realm of ‘everything will be okay forever’.

So Mikaere recently enjoyed a good period. I got a bit superstitious about it and didn’t want to say anything in case it jinxed it. This makes zero logical sense and I know that Kai’s wellbeing does not hinge on whether I say he’s doing well or not. Nonetheless, there a words we don’t say unless we have to, and when we do we touch wood. (I’ve never been more superstitious in my life – when there are big, important things you can’t control you find ways to make yourself feel better about them).

So. Let me tell you a big thing. Mikaere hadn’t had a seizure since before Christmas.

Until last week.

I can’t begin to tell you how we watched him progress with no seizures. How his eyesight got better, how he started sleeping through the night, how his tone improved, how we saw more smiles and how he started vocalising more and eating better. Doing everything more and better. When his brain wasn’t fighting seizures it was developing. With new skills and new all sorts.

We don’t know why the seizures stopped. It could be he was well. It could be the medications were bang on. It could be the neuroprotectant meds we started. It could be that the planets were aligned or the sands were blowing east in Africa.

We don’t know and that bothers me. If I don’t know then I cant replicate it. This giant balancing act we’re constantly managing, we’ve hit on a magic time and I don’t know what we’ve done. Maybe we didn’t do anything. Maybe this is something we can’t control.

I hate that idea, because now the seizures are back and I don’t know why or how to stop them.

The first one I just caught out of the edge of my eye and I wasn’t convinced it was a seizure. It could have been a stretch, or a twitch. The second one was unmistakably a seizure. Fuck. Fuck fuck fuck fuck fuck. I don’t even know how to explain the despair. That terrible sinking feeling, the ‘here we go, battlestations’ type familiar mentality you have when your baby has frequent fits.

I’ve spent hours pouring over my notes of his meds, all the activities we’ve done in the last few weeks to figure it what was going on. Was his meds off? Had he outgrown his meds, has he put on weight or lost weight? Was he in pain? Was it something he ate? Did I feed him something with unlisted ingredients that he’s reacting to? Was it something I stored his food in, did something leach? Did he have a temp, was he ill? Was he teething? Is this NKH progression? The constant back and forth and second guessing.

And then the constantly whirling questions about the affects of the seizures. Was Mikaere going to lose all the skills we’d been working on? Was he going to lose his developmental momentum? Were we going to back to sleeping in shifts and constantly on guard? Was this going to slip down into something more sinister?

I don’t know. It’s tough not knowing. I did what I could, which was check and recheck his emergency meds, the rescue medication. I settled in the counting and timing and comforting after each one. I became paranoid about leaving the room, and would even move him into the bathroom with me if I had to use the facilities.

I just, I hate this. I hate that my baby is suffering seizures again. They’re so disorienting and horrible for Mikaere. They mess up our days and we’re all out of routine.

And then it got worse. The seizures started clustering, and we started having to give emergency rescue medication. I cried the first time, as a gently administered a round of midazolam. Kai’s grandad once told us that it’s midazolam they use the euthanise whales that have stranded themselves. I hate sedating Mikaere. I hate watching him slip into that groggy fog, I hate watching him fight to stay conscious. I hate watching him seize more though, so I do it.

But then he seized again, multiple times. And throughout the day I was using more and more rescue meds.

And I realise that this is exactly what I worried about in the good times. That we’d end up here, multiple clusters of seizures, having to use emergency rescue meds, watching my baby suffer continuously and not knowing what damage is happening to his little brain.

Seizures are horrific. NKH is such a bitch

—-

I know I’m always asking. Help us find a cure. Donate, or buy an Eva book if you’re able. Every bit helps.

Jan 15
1

On the good times

By | #teammikaere | No Comments

You guys. I know my posts have been light over the Christmas break. Part of that is because Mikaere is doing so well.

SO WELL.

So well, he’s having seizure free days (touch all the superstitious wood, what a miracle).

We don’t know why this is exactly. I wish we did. Mostly we speculate. It could be his meds are perfect. It could be he’s not ill and he’s had time to relax and now his body is managing his NKH systems rather than an infection or other kind of bodily stress. It could be anything.

The big thing is the knock on effect this has. Mikaere is awake and aware. His vision is improving, with him proper focusing and following on objects, even ones that don’t make noise!

He’s vocalising. Laughing and chatting and crying, protesting, using his voice (!!) to indicate how he’s feeling!

He’s eating orally. Like a champ. Not all his feeds but a ginormous portion of them. He shows likes and dislikes, too. Custard is in. Beef and vege he’s not 100% about. Broccoli is a big fat no go.

He’s more aware of his body, a lot more wriggling, and dare I even say it, for a second or two he can even hold his head up. I’ll take those seconds as a win. I’m positively delighted that’s even a possibility.

He’s even been able to move back into his own crib, and we’re even able to (very tentatively) trust the baby monitor and be in another room (!!!) while he’s sleeping. Oh my days, being in another room while he’s sleeping and only watching the baby monitor feels positively insane. Crazy. (We’re wild parents, look at us go!)

Mikaere is doing WELL.

Here’s the flip side. We’re on a peak at the minute. A glorious glorious peak where Mikaere smiles (!!) and we’re all beyond delighted with his progress, because there IS progress. He’s developing (!!). Thriving(!!!!). Times are good! (!!!!!!!!!)

But we know that everything comes in waves and I’m on edge waiting for everything to slide down into that trough. Waiting for the downslide has me tense. And worried and watching every small move like a hawk, wondering if this is it. Every time we do something I wonder if it will cause that downslide.

I’m enjoying the blue skies that come with this peak, but in a very tense waiting-for-the-next-thing kind of a way. It’s hard to relax into the good times. Hey ho. I’m more than happy to keep practicing 🙂

So, our little baby guy is doing so well. Long may it last!