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Stand With Archie

  • 1.5 weeks Post op

      26 October 2025
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    Had a good day today with Archie. He was much happier and active today and was shaking much less discomfort from his tummy. He went through so much, and his post op care has been intense and challenging but we hope he’s turned a corner.

    He’s responded well to the removal of the NG - much less fetching, gagging and of course vomiting (no vomiting in fact) so we hope once he recovers of the next six weeks, life will be much better for him. It’s been a real pleasure to see him without it takes to his face.

    Thanks everyone for all to our support. Every donation has touched us deeply, and we appreciate every page share to get Archie out there.

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  • Home now.

      20 October 2025
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    We are pleased to say that Archie came home yesterday! We are so happy to have our little family back together. It’s been so, so nice to see his face without tape or a tube.

    It was a stressful few days, watching our wee boy post op but he pull through like the fighter he is. Now we are adapting to our new normal so (of no vomiting yay!!!!) and adapting a new routine to his g-tube. We are looking forward to this being replaced with the button in 6 weeks or so.

    Here’s to doing normal things as a family finally. And no more nasal tube or tape on his face!

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  • Surgery success

      17 October 2025
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    Archie’s surgery went well on Wednesday. Due to his small size they weren’t able to get the Mic-key in so he has a G-tube for the next six weeks. The Nissen went well, grommets in and heart echo normal. We’ve got a road of recovery ahead of us but early signs are things look like they’ll be ok. We’ve asked a lot of his little body but he’s a fighter and we know will do his best, as always. But no more nasal tube!!!!

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  • Surgery tomorrow

      14 October 2025
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    Surgery day is tomorrow. We are quite apprehensive at this point but it'll be good to get it over with.

    We’re towards the end of two weeks of quarantine for Archie, and a week for his sister to try to limit bugs. Touch wood but it seems to have worked. Archie’s been happy and sleeping a bit better lately so that’s given mum and I a chance to recharge a little bit.

    Hopefully this pic is the last one of him with tape on his face and a tube in his nose.

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  • Archie’s daily feeding routine

      9 October 2025

    To give an idea of what daily life looks like caring for Archie, here’s what we do for each of his bolus feeds (his night feed is via pump so a little bit different but just as complex):

    Feed Prep (every 3–4 hours):

    • Boil the jug

    • Add 120ml chilled boiled water to the bottle

    • Add 60ml boiling water

    • Add five scoops of Neocate formula

    • Shake and level to 150ml total

    • Add iron and vitamin D (if morning feed)

    • Prepare tissues in the bassinet for spills

    Feeding:

    • Connect bolus syringe to Archie’s NG tube

    • Slowly give the first half of the feed, watching for reflux or vomiting

    • Give the second half once settled

    • Flush the tube with water

    Aftercare:

    • Wash and sterilise everything

    • Monitor for spills, coughing, or distress

    • Repeat during the day

    Each feed takes around 30–40 minutes from start to finish. This routine runs morning to night, every day.

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  • Surgery countdown

      5 October 2025

    Only 9 days to go until surgery day (Oct 15th). We’ve taken Archie and his sister out of daycare now to ensure there are no bugs and so he can recover from his current one before surgery day.

    We’ve waited for what feels like ages, but in reality is not much time at all and others have to wait longer than we have, so for that we are very grateful. We just want the vomiting, the aspirating, screaming, lost calories, long illnesses and sleepless nights to ease. Fingers crossed this all works out for him.

    Thank you to everyone who has supported our wee family - you all mean so much to us.

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  • Pre-surgical assessment #2

      3 October 2025

    We’ve just seen his ENT for his second pre-surgical assessment.

    They’ve approved doing his grommets if it’s safe to do so, given how tiny he is. Fingers crossed that helps his hearing and any discomfort the fluid in his ears are causing.

    Now it’s time to wait for surgery day. The focus is to help him get over this latest respiratory bug and get well for surgery.

    We’ve ended the week with five appointments.

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  • Pre-surgical assessment

      29 September 2025

    We’ve had our first pre-surgical assessment with the Anaesthetist. The next one later this week is with his ENT.

    It’s critical he is well for this operation so we are taking him out of daycare for the weeks leading up to the surgery to ensure he’s as well as can be. As you can imagine, juggling him, work and everything in between will be intense but it’s the best course of action.

    The operation itself is going to be:

    - PEG to insert Mic-key button

    - Nissen Fundiplication

    - Grommets

    - Heart Echo scan

    - Blood draw to check for nutrient absorption

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  • Context - How many appointments, spills, etc

      26 September 2025

    We thought it'd be interesting to provide a snapshot of what it looks like caring and advocating for Archie:

    Over the last five weeks:

    - 226 spills / vomiting events

    - 161 tube feeds (nil oral feeds)

    - 14 medical appointments

    - 20-25 correspondence with his medical team (texts / emails / phone)

    - 70 Loads of washing

    - 5 wakes per night (on average)

    - Two weeks of daycare absence

    This doesn't include the endless worrying and yoyoying about his future and what it means, whilst also working full time and caring for his 4 year old sister. It feels relentless.

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  • Advocacy win

      25 September 2025

    After weeks of advocacy, pushback, vexation, frustration and struggle we finally convinced his Drs to prescribe NeoCate formula.

    When Archie switched from EBM to formula, he didn’t react well to it at all. His vomiting reached crisis levels (think 15+ times a day, sometimes entire feeds) let alone the awful nights. We then were switched to a hydrolysed formula which essentially did nothing for five weeks. He started to settle a little bit on it but nothing like his baseline.

    Now that he’s been on the NeoCate for just 24 hours he’s much more settled. We hope this will allow us to get a bit of rest before his surgery in a few weeks (particularly as we need to take him out of daycare to ensure he doesn’t get sick)

    If you’re a parent advocating for your child, stick at it. It can get exhausting and frustrating but the results speak for themselves. Trust your gut. You know your kids better than any person on this planet.

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  • Surgery booked

      23 September 2025

    We finally have a date for Archie’s surgery to try to control his reflux and vomiting. He’s going to have a Mic-key button inserted into his tummy along with a Nissen Fundoplication. This means new can remove the NG tube and tape from his face! We’ve only ever seen his face without the NG and tape for a few hours his whole life so we are very excited about that.

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