Tag

emotional pitfalls

May 02
0

NKH Awareness Day – Help us cure NKH

By | #teammikaere | No Comments

It’s NKH Awareness Day today. I’ve been posting all week on facebook + instagram about NKH. Facts and trivia (as much as rare and terminal metabolic disorders can have trivia).

Here’s my ask: Instead of your usual flat white, please swap your coffee today for a donation. Please donate. Please donate. £3. £5. £15.

If donations aren’t your thing, please buy an Eva book (all royalties go to Joseph’s Goal). Please change your amazon smile charity of choice to Joseph’s Goal. Please change your profile picture on facebook to the NKH frame. Please share this post.

Today is the day, where once a year we as an NKH community make a big push. Our lives are hard – you know this. Not every family has the means or resources or support to fundraise, and so most families ask once a year, on this day.

Here’s what I can tell you. Your funds are making a difference. In the last year, there has:

  • Been the creation of zebra fish, mouse + worm NKH models. This is HUGE. Researchers can use these models to better understand how NKH works, at a much faster rate.
  • There has been progress in understanding how NKH works (in that it’s not *just* high glycine that causes issues, but also all the metabolic pathways that need molecules from the broken glycine system).
  • There has been progress in narrowing down which currently approved FDA drugs might work as a chaperone for NKH (this is also HUGE).
  • There has been signs that gene replacement therapy can be successful in mice (this is also SO HUGE, this is a CURE)
  • There has been research into replicating NKH into an algorithm for diagnostic use, which is HUGE and AMAZING and has the potential to help so many families.

There is more detail and more information that I can’t share, as it’s all unpublished and I’m being intentionally vague, but I want to share that progress is being made in NKH research. It’s progress that’s being funded by you.

For every £5 you’ve donated to Margot’s Marathon or Katy’s Run, or for every wine you’ve bought at a wine tasting, for every BV person who is doing Tough Mudder – you GUYS! You are paying for real research, real research that is underfunded, real research that has the potential to improve children’s lives dramatically.

So please donate today. Please go out and tell someone about NKH. Tell them about Mikaere. Organise a fundraiser in your office, a bake off, a poker match, a fun run. The stakes are small, and every single donation helps. Every single donation is funding research that will change lives.

Happy NKH Awareness Day. Thank you for being in our corner. We love you.

Apr 30
0

On moving between fear and loss

By | #teammikaere | No Comments

In the NKH Community there’s a death bandwagon that happens after a family announce their angel has gained their wings. Hundreds of messages are sent to the family. Publicly every NKH page has an announcement, with a picture. It takes over facebook, really. Hundreds of comments are left for the family, and hundreds of comments are sent to the people who posted about the community loss. They have prayers, and are sorry for all the losses and are sending so much love (I’ve said those platitudes too, no judgement here).

I’m not sure how I feel about this bandwagon – this giant flood of not so comforting posts. I’m torn.

I’ve been that poster. I’ve posted about more children passing than I would like too. I said I was devastated, and heartbroken and struggling. But truth is for most of the children I’ve posted about – I’d never met that child. I’d known them through the community, through the posts that their parents made. The pictures they put up. The messages they sent. Halle Mae. Kaleb. Mayanak. Cathryn. Gregory. Siem.

I say their names to remember them. They’re important, and they were so loved and will be fiercely missed.

But truth is, I never met them. I don’t have relationships with their parents. The grief of their parents I imagine is huge and very much theirs. But I don’t know them and I can’t know for sure. My grief? I didn’t know it at the time but my grief is fear that it will happen to my child. I posted about these children in such a blithe manner. I really did. I had feelings and I took to the internet (I still am, clearly).

But now I’ve had tiny insight to the other side. Alexander, a boy I knew in real life outside of the internet and met, several times in the last two years died. I adore his Mama, and we’d send messages and do visits and invite each other to the few social gatherings we arranged each year. We’re on each others Christmas Card Lists. I knew he was ill and visited when I could. I knew when it was days and couldn’t visit and it broke me. They graciously let us know when he’d gained his wings, and oh. I had a whole lot of complex feelings, and I felt so strongly for his parents. I struggled, and thought of him constantly.

It was raw, this grief. Because this grief wasn’t about my son, it wasn’t about how I felt about NKH, it wasn’t a fear that one day NKH will take Mikaere. This grief was about Alexander, the dent he’d made in our lives and the hole that exists where he was. I was feeling his loss, specifically. His loss, and such compassion and love for his parents and their loss.

And after his parents let the world know and the memorial posts came flooding in I wanted to tell everyone to shut up. I didn’t, of course. They have grief and feelings and love and none of it was malicious and they have every right to post and make videos and share their grief and they should absolutely do that.

After some gentle examination I worked how I was upset because I could see the difference in my posts. The difference between grief and my fear for Mikaere, and grief that’s because I feel the loss for Alexander specifically. I wanted to say the later feels more genuine, I don’t think that’s true. It’s grief. Complex and unwieldy. I don’t know if that difference even matters. My grief is all over the place, and I’m trying to think and feel my way through it.

I’m struggling. I don’t know how to feel about it. But I do know that I want you to know about it. Not my grief and my feelings but I want to talk about grief. I wish there was more open, genuine talk about grief and death. I can’t help but feel that if we as a society were more open to grief and death, and if we were okay to sit with the uncomfortable together for one hot minute without trying to shy away or fix the unfixable the burden might be less. That we might be able to sit together to remember the people who are important to us, that we could openly feel and say how grief is complex. How death is unfair and brutal and a relief and grace and there is anger and pain and love and hurt and it’s all mixed in together. That we can love and miss and grieve openly without someone telling us to pull it together, or hide it away.

And I get how crazy that is, because here I am trying desperately (and openly) trying to come to terms with my grief over and over and over. In one post after another. I’m trying to be open to feeling what I feel around grief and death. Right now it feels so wrong, and hurts and it’s heavy and huge. I can’t help but think there must be some other way (or rather, that there must be some better way forward for managing those feelings). That there is a way to have a better and healthier relationship with life, illness and death.

We’ll see. I’m sure there will be more posts on grief.

Apr 01
0

On Portage and Shaving foam

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We’re on the portage service, which is basically play therapy. Our lovely therapist Jackie comes to visit and brings a bag very much like Mary Poppins carpet bag of amazing. There are always interesting wonders in her bag.

A few weeks ago she bought by shaving foam. We’d been struggling to keep Mikaere entertained. While I’m struggling, anything that requires spontaneity or effort is tricky. Well, enter Jackie and her magic shaving foam, and Kai went to TOWN.

I wouldn’t have thought about shaving foam before. I’m not adverse to messy play, but it’s hard to get out of your bubble and find things that would work for Mikaere that he’d enjoy. Shaving foam was definitely a treat and it went EVERYWHERE. It was hilarious, and amazing and we all had a great time.

Thank goodness for play therapists, hey?

Mar 28
1

Still thinking about Grief

By | #teammikaere | One Comment

Okay. I’ve spoken to so many people about grief. About people who work in hospice, who work in hospitals, who have lost parents or partners or children.

Grief is huge and it touches everyone.

I feel like I’m in the (fairly) unique position of the special needs life with a terminal child. I grieve the special needs life, that we never got to experience the special needs life,that Kai has NKH. I grieve children we know and love who have died, and those that will die. I grieve that one day Kai will die.

My present and my future is filled with grief. Constant. Cyclic. Never ending.

I’m going to tell you a thing. I don’t tell you because I’m looking for pity, but I do feel like it’s a part of the path we’re walking.  I’m down you guys. Not in a ‘just a bit down, a bit sad’ way, but in a ‘lost all hope currently in the dark abyss’ kind of way.

Intellectually I’ve always know that my baby is going to die. I’ve always know that children with NKH die. I’ve always known that my child is disabled.

Emotionally I didn’t feel until these last few months. There are children *dying*. Children have DIED. Halle Mae. Kaleb. Alexander. Cathryn. Gregory. Siem. Those are children who were so loved, and had lives and families and now because of NKH have died. I didn’t know all those children personally, but Alexander (and our sweet friend Rauirí) – their losses both threw me into the left field of murky grief (even now I want to excuse my feelings – my feelings are inconsequential to their families grief, the idea of losing your child is nothing next to actually losing your child).

And as I was desperately trying to manage those feelings, of what it was like to have children you know and love pass away, it became really clear that Mikaere isn’t severe. We cheer on his milestones but what it means is he has a longer life expectancy than we originally thought… except, life length is not the same as quality of life. And then my beautiful boy turned two. As I carried him in my arms, his little head resting on my shoulder, I watched a boy younger than Kai jump through some fallen leaves. Another child walked by, holding his dads hand as he toddled past.

My son is disabled. And that’s hard to admit, because I don’t want that life for him, or for us.

Intellectually it’s easy to say that it would be better if he died sooner, rather than later. He’d suffer less, less seizures, less pain. But I can’t wish for my baby to die, I just can’t.

And I feel stuck in the middle. My beautiful baby boy is disabled and is going to die. Between the grief I have for the children who have died, and grief I have that mine will, and the grief that our life is not the neurotypical… I feel helpless. I feel hopeless.

I feel like there is nothing I can do – literally. I can’t fix this. I can’t fix my baby. I can’t heal him, or take away the NKH or the damage that’s been done. I can’t make any choices that would relieve him of those symptoms. Excellent care, or shit care – he’s still have seizures. He’s still suffering. He’s still hurting. And we’re still stuck in that hard place, the horrid special needs life where Kai has seizures and pain and hospital visits (not all the time, granted. But a lot of the time) and then when all of this is finished, when it’s all said and done, it will be because he’s died. When there have been so many other children we know and have loved who have died… this reality is painfully raw and close.

So. I’m in the dark-lost-all-hope-in-the-deep-abyss place. I’m finding it hard to get out of it, hey. I’m slow to move, tired and I snap at Sam over tiny things. I can’t get myself moving, and caring for Kai is about all I can do (I miss the girl from last year, who was determined to make change and had a million different fundraising things on the go. Where did she go?)

I’m going to ask that you hold all your well meaning comments to yourself for a moment. Yes we’re talking to a therapist who specialises in special needs, bereavement and palliative care, yes we’re very strong and we’re amazing parents and no you probably can’t imagine and I’d really like if you weren’t sorry, or were thinking of us or sending love.

I don’t mean to be callous here, but when you send me the same words that everyone else sends me it becomes meaningless. Platitudes feel insincere and widen the isolation gap because I feel like you don’t understand, like I wasn’t clear enough, or my feelings are too big for you to meaningfully respond to.

The way to avoid platitudes is to be specific – what specifically are you sorry about, and why is that important to you? What are you thinking, genuinely? What thoughts are you sending and why? It’s harder to express and requires more work on your part, but if the connection is genuine, it makes me feel less alone. I read a quote about how words aren’t measured at the speakers mouth but the listeners ear. It seems apt and explains why platitudes are so so shit to receive.

Platitudes aside, here’s what I’d like: tell me something amazing that happened to you today. Tell me something that’s made you laugh today. Tell me something happy.  Fill my comment thread with happy happy things.

If you were about to type ‘I’m here if you need me’ or ‘if there’s anything you need’- here is what I need: a cure for my baby. Here’s how you can help: donate. Fundraise. Run a bake sale/competition at work. Run a 10k and fundraise on just giving. Give up chocolate for a month, and for every craving donate a £1. Start a swear jar and donate the contents at the end of six weeks. Sell something on eBay. Have a fundraising BBQ. Run a raffle. Raise £10. Raise £50. Raise £5000. Raise something.

If you know me in person, please come visit. If you can’t visit, please call me for a chat. Just to say hi. A two minute hello. If you can’t call, or I don’t answer because I’m busy with Kaikai, leave a 30 second whatsapp audio message, so I can hear you. I can’t tell you how heart warming it is to hear someones voice. I’ll take it, greedily, that 30 second audio file. Isolation, I’m struggling with it. That abyss feels deeper when I’m alone all day with my thoughts and a nonverbal baby. As I type this, I’m sat by Kai, who has just had a seizure and is now in that horrible sleeping-recovery phase. I can’t go anywhere, and I’m heartbroken, having to watch him suffer over and over. I’m lonely and scared for our future and I don’t know what to do with myself.

I know, I know, so many people have said ‘just call me if you need, anytime, call me’ and I’m grateful, but I can’t get out of my head long enough to recognise I could use the company and do something about it. Please don’t wait for me to call you. Please just call to say hey,  a two minute conversation when you’re free.

It’s a weird place to be in. I literally don’t see a way to turn. We’re either living the special needs life (which has moments of up but mostly moments of extreme down), or we’re living without Mikaere (I can only think how horrific that would be for us). Both of those options seem unfathomonly unfair and hard and devastating. I don’t know how to navigate through the grief either of those situations. It seems hopeless. My present and my future are filled with so much grief. And so, abyss. That’s where I am right now. Womp.

Nov 19
0

I’m still pondering grief

By | #teammikaere | No Comments

Death is natural. It’s as natural as living. We all die, we all know someone whose died and we all will die. One day. I’m mulling over death, and grief. Forever and always, I think. Is our grief compounded because we don’t live in villages anymore, and we don’t see death in our day to day? We hide away death, we have a funeral that lasts no time at all, we eat little sandwiches and say “I’m so sorry for your loss”. And then we grieve in private, smushing down those feelings we have as we try push through as if we’re fine? Untouched?

I wondered if people who work in funeral homes, doctors in the special care units, nurses in hospice, who deal with death on a regular basis have a healthier grief management system. Do they have a healthier emotional grieving process because they’re exposed to so much more grief? (I asked… I don’t think they do. The several people I asked said it was hard, but it wasn’t their personal pain. Plus they felt like they were helping people, making a difference. I guess having a virtuous purpose relieves some of that emotional weight).

As you can see I’m trying desperately to wrap my head and heart around death, considering we’re surrounded by it. Death is happening frequently to kids we know and love.

If death is natural, why do we fight feeling grief? Do I need to fight grief? Do I feel more grief, considering it’s children who are dying? Children we work so intensely hard to keep alive? If they lived longer, would I feel as hard done by? If they lived fuller lives, if they were less disabled? As horrid as it is, when an adult is sick, or has passed in my head I think, as an adult they had the opportunity to live. They traveled or loved or did whatever it is they wanted to do – they lived. They had time, they had years to fill with life. Our kids don’t have the same opportunities.

Is living and loving and having years and years before you die more natural? I think we have the expectation that that’s the order of how things are meant to go. Does that make it more natural though?

It hard to come to peace with loss. Loss is unavoidable, we’re attached to people and things and outcomes and expectations. I feel like grief is the weighted opposite of love. That the love that I have directly influences the grief I have… but if love is a natural as breathing and we feel such deep depths of love for our children, is grief natural too?

My question, I guess, is how do I survive this? How do I protect my heart from all the grief? How do I do that while still being open and part of the NKH community, while still loving all those other little terminal children? And if I’m open, if I’m vulnerable, how do I survive all the losses? The losses that keep coming?

I don’t have answers. I’m feeling what I’m feeling. I’m struggling, hey. The grief, it’s a real thing. Holding my boy a bit tighter today.

Nov 16
0

On our Seatbelt Medical Alerts

By | #teammikaere | No Comments

I’ve talked about medical alert car stickers a while back, for alerting emergency response if there was ever an accident that Mikaere was non-mobile, non-verbal and an epileptic. It says in red Nonketotic Hyperglycinemia, so they can’t miss it. It also says Glycine Encephalopathy so they don’t confuse it with Nonketotic Hyperglycaemia, because you know someone’s in a rush that’s what they’ll read and if I’m not there to advocate for my baby you can bet they’ll test his blood sugars unnecessarily.

Anyway, what I wanted to say is that I found these medical alert seatbelt straps, for both the buggy and the car seat. They live on the straps, so we don’t need to remember them. Inside there is a little card with our details, the basics of his diagnosis AND a link to his medical care plan (essentially our cheat sheet).

It’s such a huge thing, my fear about not being able to advocate for Mikaere. About all those what if scenarios. I feel like we live in that space where all the unlikely things happen (a weird kind of luck?) and I want to give him the best shot I can.

So, seatbelt medical alerts. He’s got one on his car seat, and one on his buggy. A simple easy thing we’ve done to help stave off the worst case. Worth it, hey?

The place we got ours no longer sells them (womp!) but there are other places like here or here.

 

Nov 07
0

On the isolation of the special needs life

By | #teammikaere | No Comments

Over the summer my world got bigger, just for a moment. Sam had some time off, which meant that we could split caring for Kai. It meant some time for me. I worked, for a bit. Travelled some. Essentially I stepped away from the special needs life into what felt like taking back a bit of my life.

And I’m struggling to step back into the special needs world. Don’t get me wrong, I love Mikaere, with every fibre of my being and he delights me like no other. I love being his Mum.

But in the special needs life, I’m not just his Mum. I’m his nurse, and his chef and personal assistant and therapist and every moment is about monitoring and repositioning and anticipating his medical needs moment to moment. Watching the time for his meds, blends, flushes and sterilising. Repositioning him upright so he can cough, watching for those tiny moments where I can interject baby led physio, and a lot of the time not baby led Physio or OT or laser therapy. Keeping him entertained, or settling him to sleep.

It’s making myself smaller to fit into the very intense schedule of his day, managing the nurses and therapists and remembering appointments and chasing the thirty or so different things we’re currently juggling.

It was hard to leave Mikaere with Sam so I could have some time. It felt selfish. At the same time, it felt like falling into an oasis after walking months in the dessert. I got to speak to people outside of our nurses. I danced through some side hustles. People talked to me as if I was a competent adult. I didn’t have to fight anyone. I found some independence for me.

And now, making myself smaller, putting aside myself for the same same mundane, for the small moments, for the intensity of Mikaere’s day to day. I’m having a hard time with that. I find it hard to get moving, I’m leaning heavy on Sam and I’m spending too much time in the ‘what if’ daydream.

Most neurotypical Mums, they get to go work (or not, if they don’t want to). They can leave their kids with babysitters and have nights out with their partners. They can travel with their family. They can take public transport and take their kids where the crowds go. Their kids, eventually, grow to be somewhat independent. Where they can play without you sitting right there to make sure they don’t have seizures or aspirate or vomit or whatever else might go wrong.

I’m whinging, I know. The special needs life sucks so hard for everyone.

I read a book once, a fiction something a rather, where they played the champagne game. They’d open a bottle of champagne and bitch, for a moment. And then say something they were grateful for.

I’m gutted that I can’t go back to work full time, but I’m grateful we have the means so I don’t have.

I’m beyond gutted Mikaere lives a life less than the neurotypical life, but he’s here and he’s happy and content and I love him.

I’m sad that when we travel, it will always be split – Sam, Mikaere and I are unlikely to travel together internationally (boo immune vulnerabilities and planes), but I’m grateful that this summer I’ve had the chance to visit some phenomenal places, bucket list destinations.

I’m sad that our family doesn’t get to walk the neurotypical path, but I’m grateful I have a family, and we’re all well loved.

I’m sad I’m going back to my day to day with a heavy heart, but I’m grateful my day to day is still there to go back to.

Hey ho. Onwards we go.

Nov 05
0

On normalising death

By | #teammikaere | No Comments

There are a few NKH kids right now who are struggling. Who are at home and ill. Who are in hospital on the ward. Who are in hospice, on what the doctors say is towards the end of their lives. It’s hard, being in a virtual community, physically so far away knowing these families are hurting, that these kids are suffering.

There are also many children who have fought their fight with NKH, who have gained their angel wings and are no longer suffering. Their families are still grieving, though. Still hurting.

And I say all these things, but I don’t have words for how deep the suffering is. How truly intense and horrific it is. I don’t have words for that kind of anguish.

I struggle. I don’t have words and I think this is all coming out wrong – how do I talk about this? How do I talk about the tears and the emotions just below the surface? How I’m constantly grappling with how I feel, with grief. Is it a relief for all the children who have passed? Will it be a relief for the children who are suffering right now, considering how much pain and hurt there has been in their lives? Is there relief for their families? Will there one day be relief for us?

Because that’s the thing, I can’t comprehend Mikaere dying. I can’t. But he will, one day, because NKH is terminal.  I don’t want death to visit us. I don’t want death to visit any of the families that are waiting for it right now. I don’t want the curtain of grief to envelop any of our NKH families. I just don’t.

And I feel powerless to help. The families who children have passed, the families that are struggling.  I don’t feel I can bring comfort to them. I don’t know how to support them. I send messages to let them know we’re thinking of them (and I am, all day every day) but it feels… inconsequential. I feel powerless to help our little family, and the endless waiting and fear for the terminal end.

There have been a few times we’ve waited for the news. A handful of times we’ve sat, anxiously waiting for that call, to hear when another child gained their angel wings. We’d send love and thoughts and cry. We’d talk about organ failure and seizures and that respiratory arrest is more likely to happen before cardiac arrest. We talk about the dignified death bill, and slower than slow breathing rates. We’re normalising the lead up to death.

I hate that this kind of conversation is normal for us now. That we as parents fight so hard to keep our children happy and healthy, and that we’re powerless in the end to stop the pain and suffering that comes with NKH.

I hate that our days with our kids are tinged with the word terminal. That sometime in our future with Mikaere we’ll be in the same position. That we’ll, one day, be watching his organs fail and be witness to his pain and his suffering. To his death. Just like other NKH families are right now.

I’m heartbroken. I’m absolutely heartbroken.

I’m talking about death and dying today because November 2nd, was NKH Remembrance Day. I’m late by a few days, but I want to pause and remember our NKH kids.

I want remember Alexander, the sweetest little sausage there was. I want to to remember Kaleb, and his cheeky grin.

Gregory, and his brother Elijah who is missing him. Halle Mae. And Cathryn. Maynak. Siem.

There are actually many more children. There’s a list. A list of 124 children who have died from NKH whose names should be remembered. There’s a slide show, even. And I started reading the names… there are so many names. Too many names.

And I’m aware that these names, they’re just the ones in our NKH group. They’re just the ones we know about. Other languages, other countries… they have their own groups with children who are dying before their time. They also probably don’t include the families whose babies died before they could even find support in the NKH groups.

Too many names. Too many children.

I don’t want them to be forgotten. I want to remember them, I want their families to know I remember them. To know their names, and their faces. They made marks, they made a difference. They were loved.

I held my little guy a bit closer today while I remember the others. And I think about how all of those children were so loved like I love my little guy. So loved and cherished. NKH can suck it.

 

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. 🙁