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367 Days Of hospital Life & Counting

  • 16 Months today & still counting 🙏

      24 June 2019
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    24/05/18

    16 months old today and we have been very busy, Draco decided to pull out his NJ tube for the last time before he gets his G-Tube in 2 days.

    We are all packed and booked to fly out to Christchurch tomorrow for surgery the following afternoon. Draco will be in theatre for roughly 4 hours while they do his G-tube, Morgagni Hernia Repair and Nissen Fundoplication and is expected to spend the first night in ICU and transfer to the ward in Christchurch for a week before coming back to Dunedin Hospital. We have really enjoyed spending the past 4 months at home (other than a few minor hospital stays) and really look forward to this wee bump in the road being over so we are able to focus on living a somewhat regular life until his next big surgery at 5 years old.

    Thanks so much for all your support, it has been amazing xxx

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  • 368 Days and I turned 1 on Sunday

      26 February 2019
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    Just here to update and thank you for coming to our 1st birthday, weather it was in person or thoughts

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  • 18/01/2019

      18 January 2019
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    Look at this beautiful little lad.. 1st time in his little life he's worn clothes, normally clothes are just to much for his body temperature, we were told to give it a go..

    Annaleah says a huge thank you to you all that follow her or jump online to FB and join her there to chat and see loads more photos..

    Xxxxx

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  • Day 317 😘

      7 January 2019
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    Being a medical mum isn’t always happy days with good numbers and plenty of smiles. Some days it’s telling yourself when you wake up “it’s going to be okay, we are going to have a good day”, some days it’s holding your baby as they struggle to breathe praying to a god you don’t believe in that they will be okay, some days it’s crying in the bathroom while your baby sleeps because your so exhausted, today was one of those bad days. Today like most when I woke up I told myself it will be a good day, today I was wrong. After spending a week advocating for Draco trying to get tube feeds started again because his milk intake dropped significantly as well as his weight I finally managed to get top up milk supplies a few days ago so what isn’t drunk in his bottle was put through his NG tube, today the doctors decided to stop this and as you can imagine I was devastated. I don’t believe 10-40ml a feed and then a vomit afterwards is enough to keep someone so young and delicate hydrated all my hard work fighting was once again down the drain, they also didn’t say anything about the fact that many nurses believe he may have an obstruction in his airway meaning they probably won’t be following that up. They also made the decision to drop his steroid dose and for those who don’t know Draco that well this often results in him going down hill, not always but because over the last 3 days his work of breathing has started to increase this also worried me. After living this hospital life for 317 days, being exhausted and stressed my head immediately went to worse case scenario and I broke down. Today while playing games with my son, while feeding him and watching Thomas the tank engine with him I smiled with tears streaming down my face but they weren’t tears of joy they were tears of a very tired, scared and broken mum. While he slept I hid in the bathroom trying to pull myself together because that’s what mums do today wasn’t easy but we got through it like we do every bad day. Thanks to my amazing mum and some great staff I have a self care day planned for tomorrow and there will be a nurse with Draco for the day. On a positive note Draco told me he wants you all to know that all the sounds he knows how to make will never be enough to explain how greatful and thankful he is to his absolutely amazing gnana and ggdog and because thanks to them we are now in the process of officially owning our own battery powered airvo woohoo. We hope everyone out there had an amazing day❤️

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  • Day 258 We would dearly love our own Airvo Machine

      29 November 2018

    With dracos high level of oxygen requirements we are looking at hospital for another 12months possibly longer.

    His oxygen comes from the wall of the hospital so for us to actually leave the room is impossible unless we have an airvo machine.

    This is available to us to borrow from the 7th floor of our hospital but only when they don't need it.

    We would love to be able to raise enough money to buy our own so we can get him out a bit more. This machine only gives us an hour out of our room and off course we need to stay in the hospital but it would allow us to go to toy room and a bath he can fit in.

    We would love for him to experience a bit more freedom before the new year, as we will have to head to starship 2019 for 1 out of his 3 operations needed.

    The cost of this machine is between 5 and 10 thousand.

    Please can you help us receive our goal and Draco to have more freedom..

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  • Things are going much better

      7 October 2018
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    Day 223: Phatz oxygen has improved again today and we are currently looking at getting put back on high flow on Monday. Between starship and Dunedin the decision has been made to keep doing what we are doing but if/when he goes downhill next we are off up north for a tracheotomy. Phatz also tried custard for the first time he’s not too keen on mixed berries but absolutely loves chocolate😍

    Taken from Annaleahs FB Page (phatz is Dracos pet name)

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  • 5th October 2018

      5 October 2018

    Day 222: So thanks to steroids and cpap phatz oxygen saturation’s have improved and he is requiring less oxygen. The steroids and cpap are only a temporary fix for a long term probably and we aren’t out of the woods yet and won’t be for a long time but we now have more wriggle room if he gets worse. Dunedin has been corresponding with starship and we may possibly be looking at another trip up there sometime soon. Thank you everyone for the messages, prayers and support❤️

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  • Please have us in your thoughts & prayers

      3 October 2018
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    Draco has gone down hill a bit the last few days his doctors have decided to put him back on cpap for his breathing but he still isn’t very good there isn’t too much that can be done right now we just have to hope and pray

    Short update while we let family process their Drs words and advice

    Please keep Annaleah & family in your prayers

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  • Note from Caroline

      25 September 2018

    Hi all I'm Caroline I started this page for Annaleah & Draco just letting you all know funds raised from our page go into my account then all transferred to Annaleahs account.

    Only because our darling Annaleah has no ID😁 xxxx

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  • 200 hospital days & still going

      14 September 2018
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    Sorry I haven't updated for awhile things have been quite busy, so today marks our 200th day in hospital & Draco keeps fighting it's wonderful to watch him grow from strength to strength, been along road, this week he is fighting 2x bugs so we are in isolation with no visitors, masks & gowns but hey I have my boy and that's the best thing in the world.

    THANK YOU TO EVERYONE who is following us and your kind donations.. xxx

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  • Day 3 and still fighting

      30 August 2018
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    Just a small update from the family, after some sad news 2 days ago our little Draco is fighting hard, day 3 and showing some small but good signs..

    THANK YOU ALL FOR YOUR THOUGHTS/PRAYERS AND MESSAGES.. XXX

    I will try and update as I can..

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  • Please pray for Draco

      28 August 2018

    Today Tuesday 28th August I ask on behalf of the family to hold Draco in your prayers, things aren't good and for privacy of the family at moment I won't go into details, but he is now back on 100% oxygen and his levels are decreasing.. I will update more when the family has time to process.. but please any financial help and loads of hope are what is needed

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  • Our stay in Starship has been extended

      9 August 2018
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    So we were supposed to leave starship yesterday to head home to Dunedin PICU where Draco lives, it didn't happen, Draco is very sick again, so we can't risk moving my precious bundle..

    So Auckland we still here

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  • Moving Hospitals again

      7 August 2018
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    So today Tuesday 7th August we have been advised Draco is not well enough for his surgury and we are to fly back to Dunedin ICU and wait a few more months there to fly back to starship once he can prove he's getting stronger..

    Thank you all for your support... 😘it's a long road

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