Sleepless Nights

Author: Veronica

  • An early minute

    This morning, I asked very nicely if Evelyn and I could come home early today. After all, she’s eating just about as well on the ward as she would at home, and aside from documenting everything that passes her lips, we weren’t doing anything different there.

    Except she was screaming every time we went back into the room. And being generally pissed off about being stuck in the city.

    But, all went well and after a big blood draw and a nap, Evelyn was set free at 2pm.

    I am so exhausted, but so grateful to be home right now, instead of clock watching on the ward, waiting for dinner and then freedom.

    Tomorrow morning she has a barium swallow done, and I’m not entirely sure how they’re planning on getting enough barium into her, but eh, I’m sure they have a plan. Maybe. After that, we should be looking at discharge, with a follow up as an outpatient next week.

    Evelyn is so glad to be home, clapping gleefully when we walked in the door. She’s running around right now, climbing things and causing chaos.

    I’m about to have my first decent unrushed cup of tea in days. And a chocolate biscuit.

    Bring on the weekend.

    hospital dinner

    This is yesterday’s hospital dinner. Pureed everything, including meat, which had the consistency of pate, but weirder. She didn’t eat any. I didn’t blame her. Today we took in all our own food, just to make it easier. And less gross.

  • Savings? I don’t need savings.

    Isaac and Maisy

    For a long time, I didn’t have any savings. When things went wrong, which they frequently did, we were left without any backup plan.

    At the time, a savings account was beyond us financially. Between rent, commuting and our growing family, we had nothing left over. But the panic every time I thought about paying the car registration, or the power bill, or something breaking eventually got to me and I couldn’t do it anymore.

    Read The Rest at Money Circle.

    money circle logo

    (Yes, we’re still in the hospital)

  • Notes from beside a hospital bed

    Gate leave, man, it’s awesome. Last night after a long day in hospital, Evelyn and I came home and slept in our own bed. Despite still being in hospital, getting to go home every evening is saving my sanity.

    We’re still getting into the routine of things. Eve had lost weight at admittance yesterday, and the speechie has noted a few things going on with her mouth when she eats, so hopefully a plan is on the way.

    We’re probably going to repeat her swallow study, this time looking for what is going on further down her oesophagus, rather than just her swallow. Right now, Eve is complicated and we’re still feeling our way forward.

    She’s asleep right now, after I walked miles up and down the corridors, with her in her pram. She’d refused to sleep in her cot, and I was grateful, so grateful,for not being tied to the ward, for being allowed to walk, for our ability to leave the climate controlled paeds ward.

    That’s really all that is happening right now. I’m tired, and not looking forward to the rest of the week, but I’m hopeful that this will be the beginning of getting her issues sorted.

    And you know, this morning she smeared an entire tub of pureed apple and blackcurrant all over herself, so that was also a bonus.

  • And we’re going back to hospital

    My bags are packed, the children are prepared, and we are almost ready. I’ve put credit on all my devices, packed Evelyn’s favourite books and socks, and spare clothes for me.

    Sadly, we’re not going on holiday, or anywhere fun. Instead, Evelyn is being admitted to RHH tomorrow for a week to teach her how to eat. A team of nurses and a speech therapist will be at hand to watch Evelyn feeding, offer suggestions and take over where necessary. We’ll be working on cutting down her breastfeeds to almost nothing, while upping her intake of real food and milk from a cup or bottle.

    Today, the plan is that we’ll be getting gate leave each night to come home and sleep in our own bed, before heading back to the hospital every morning. I’m hoping this is the plan we get to keep. There’s really nothing worse than sleeping on a hospital recliner.

    I’m not looking forward to it, frankly. But it’s a good plan – the best plan under the circumstances, and my dread is a selfish thing. Dread of having to keep an energetic opinionated toddler entertained for long hours with no one to give me a break.

    I looked at Nathan the other day and said “but what if she eats really well in the hospital?”

    That’s my biggest fear. That we’ll get in there and she will be amazing, taking all her nutrition easily.

    Nathan reminded me that she won’t be good for an entire week. No matter how much novelty is to be found in a new highchair (she detests hers) and new people, she won’t keep it up for the whole time.

    He has a good point.

    She’ll also be having more bloods taken, one lot to do a genetic screen, just in case there is something there we’re overlooking, and standard iron/vitamin D/liver function tests again. Hopefully her anaemia has resolved with the last few months of iron supplements.

    So, that’s where I’ll be for the next week. In and out of the hospital with Evelyn. Again.

    Hopefully at the end of it all Evelyn will be eating enough real food to avoid an NG tube. We’re not even interested in getting her to eat textures yet, just to eat enough purees to survive without breastmilk.

    Wish us luck.

  • And this is why you shouldn’t decorate your Christmas tree with cats

    Alfred in the Xmas tree 008

    Alfred in the Xmas tree 013

    Alfred in the Xmas tree 009

    Alfred in the Xmas tree 014

    And this is why my Christmas tree is full of holes and broken branches.