Ellly

Despite yesterday being horrid for us, our little guy is still sitting at status quo. He’s not awake. He’s still seizing. He’s still breathing by himself.  

Because he’s on a course of steroids and not moving he’s retaining all the fluid in his tissue and is swelling up like a balloon. His socks don’t fit anymore, and we’ve been struggling to keep his feet warm (they do heel pricks to take blood for blood/gas tests, and it’s easier/shorter if his feet are warm). 

My sister and Dad arrived yesterday from NZ, and they bought booties from my Mum with them, a size up so they fit his poor little feet! 

We’ve also started more (!) medication. A diuretic to help with the swelling (because the edema could impact his breathing) and a potassium supplement, because the diuretic reduces potassium levels.  

Honestly, the amount of medication he’s on is worrying, his body is so small! I’m hoping that once we can wean off some of the medication, hopefully next week or the week after, hopefully his body will respond and he’ll recover. I feel like we’re doing way too much, but each individual thing makes sense to do. I struggle with this, because he’s only tiny.

I also battle daily with the drs on things like glycine levels and his bloods going to the right labs. I pick my battles, but oh, my heart. It’s my job as his mama to worry, and to love on him. I want to trust his medical team, but they are so many of them and there’s no one person taking the lead, no one person whose responsible or consistent – just me and Sam. And NKH is so rare, that for each new nurse, each new Consultant we answer the same questions, and I trust his team a bit less. So, I love on him, and I sing to him and Vaseline his lips, and I become his medical expert too. 

We can do this, my little guy. Please pull through! 

So. Again yesterday we that quality of life/quality of death conversation. I sat in a room with two Consultants from the PICU and our palliative care nurse from Great Ormond St.

When we had this conversation last time it was in the NiCU at C&W, and our little guy was fine. I couldn’t get into the right headspace because not doing everything we could for our perfect little baby who was awake and beautiful seemed inconceivable.

Now my perfect little baby is essentially in a coma, with unknown brain function and one rubbish seizure could rob us of him. What’s more today his seizures are long, 9 minutes, 10minutes, 11 minutes. Long enough that we’re back up on the midazolam we were trying to wean him from.

So, we talk about quality of life, and we talk about his death. I cried. Literally, sobbed. No mother wants to talk about the death of her child, let alone the part where you’re meant to let it happen. Where you do less to prevent it.

Worse, is that Sam wasn’t there, he’s ill today and was on the phone. I sat in a room with three medical professionals and they lead us through a dark, horrid set of questions.

So horrid. Do we ventilate if required? Or do we not? What about CPAP? Having to talk through exactly what level of intervention we would be okay with if things took a turn for the worse is horrid.

After much tears and discussion and internal struggle, we decided that ventilation and CPAP were too much, but oxygen, positioning and suction were okay. The guilt is overwhelming. That we have decided to not do everything possible to prolong his life, and trying to balance that with the sadness that for him, his life may not be pleasant and it would be kinder to not prolong it.

As parents we’re devastated. I hate this. I positively absolutely loathe being in this position. My little baby was fine not even two weeks ago. He was awake, and we were loving on him so so hard. Now he’s in a coma.

Come on babycakes, pull through. We love you so much.

PS I know I keep banging on about it, but we’re still raising funds for NKH research. If our little guy pulls through, any hope of a future is currently at research level. Thank you to everyone, genuinely, who has donated. If you haven’t yet, please consider putting a pound or two in the pot.

I feel like we’re on a precipice and could go either way. Mikaere could improve or he could not improve.  The most reassuring part (for which I feel guilty about) is that it’s not up to me. Mikaere is maxed out on all his meds, and we’ve done everything we can (there’s an argument to be made for overstepping and have done more than we should have, too).

He could go either way and it’s up to him. We hope for improvement. Hes stable at the moment, maybe more at a plateau than a precipice, but whether he decides to go up the mountain or down into the valley… okay. I need to stop with the metaphors because there is no good one really. We want him to get better. To wake up. To be seizure free.

Our baby is unresponsive. He’s got wires everywhere and oh, my little guy. C’mon baby. Pull through. 

Update: he’s holding his own with his airway so we removed the extra oxygen support. We’re slowing weaning the midazolam and we hope the seizures stay away. Fingers crossed!  

Nothing like a tiny bit of encouraging graffiti to make you feel a teeny tiny bit better when you have to leave the hospital without your baby.

It’s depressing how familiar PICU is. The alarms are familiar. I knew exactly what they were the moment I walked in, a ventilator with likely low O2 stats, an finished infusion.

This PICU is nice. We have a large bay to ourselves (made larger because it’s designed for a young adult sized bed, rather than a little Mikaere sized incubator. It’s all open and airy and all the equipment is shiny and clever.

They also have beds. The boys sleep elsewhere on the ward but the ladies can sleep opposite the unit.

It’s nice. And we have a lovely nurse and it’s all 1-1.

It’s just… The Fear has escalated as the measures we’ve gone through to stop the seizures are many, and to end up in the PICU feels like a kick to the face.

Kai is maxed out on so many of his meds. We’re moving from oral to intravenous and we just, we can’t get ontop of these seizures. 

Every Consultant keeps asking about ventilation and whether we want to go down that route if necessary. What they’re really asking is what kind of quality of life would that be if he lived and couldn’t get off the vent. Also, quality of death. If he’s to die regardless of outcome then it doing it without being intubated would be better.

I can’t believe we’re thinking about his quality of death. He’s only 11 weeks old. I don’t want to be making decisions about his death.

I can’t believe we’re here. Hopefully, he won’t need to be intubated and we won’t need to make those kind of decisions.

C’mon baby. Please pull through.

Leaving intensive care on Christmas without my baby is horrid. I can’t believe this is happening to us again. This whole situation is horrid. I want my healthy little baby back.

I’ve had to stop looking at instagram. Everyone is having happy beautiful christmas’s with their babies, and fancy foods and families and fun times.

We ate leftovers a friend very kindly dropped off for us, and today we watched our baby seize over and over and over again.

Worst Christmas ever.

Things escalated dramatically. We’ve been admitted to intensive care.

I can’t even breathe –  I really wanted to post something cute for Christmas Day. Something light hearted. A selfie of all of us in Christmas Jumpers, or his little feet in snowman socks.

Except that Christmas morning he started having seizures. Lots of seizures. Enough that the consultants visited us before doing rounds. Enough that we gave him rescue meds to give his brain a rest. Enough that the consultant called our neurologist at home, interrupting her Christmas morning to discuss an action plan.

Enough that she felt it important to know what our quality of life stance was. Whether we had a plan.

Oh. These conversations always happen in the early hours, when I’m sleep deprived and Sam’s not here. So tricky. So heartbreaking.

Our little guy, he is not doing as we hoped. But we have a cracking team of drs (one even dressed up as Santa and walked the wards giving our presents) and we know they’re thinking through all the things.

I know this, because we’ve started B6. It was something I suggested we look into, having heard something from another NKH mum.

One of the drs said she did some research after she went home last night, and while it’s a long shot we’ll have a look. So we’ve started it.

I appreciate that we’re all working together, and they take my straw grasping seriously, with consideration. I just want what’s best, and it turns out so do they.

I said a few days ago I wasn’t scared, because I knew what was going to happen. Now? Now I have The Fear. I don’t know what’s going to happen, but this unresponsive phase is going the same way it did when we were in NICU, except he’s already on the meds. We’re already increasing them, over and over again.

So, we take it day by day. And this Christmas Day, we eat all the chocolate and mince pies, listen to carols, watch donations come in (thank you!!!), and count how long all the seizures are. And we hope. We hope our little guy will wake up, that he’ll cry, and move. We hope tomorrow will be a better day. Faith and fortitude.

PS Did manage to take a Christmas Selfie

#nkhCanSuckIt

So, despite our resignation and sad faces about being in hospital for Christmas, its not all bad. I appreciate the lengths the hospital has gone to make the ward feel Christmas-y. The halls are filled with decorations (there are two giant air filled polar bears with scarves down the way). We had carollers yesterday. And there were volunteers who gave out wrapped presents for the kids and chocolates for the parents. We also got a giant helium balloon. The kind that are terribly expensive at theme parks. 

No one chooses to be here, let alone over Christmas. But I appreciate the Christmas-y efforts.