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Shaun Adventures

  • Still in Auckland Starship

      19 August 2015

    Well... theres nothing to say at this point about what is happening with shaun. he didn't like going up a ML in his feeds so started the vomiting, his phostphate levels are too high now so taken that out of his TPN, his TPN and LIPIDS will be on 7 night a week, they won't send him back home until hes on 5 night a week, Shaun won't be going to school until he is 6 due to us not having a clearer picture on what is happening. the diabetes team are on the case at the moment due to this all might be a cause of his hormones. Noone knows what is happening with this boy but he will not be sent back home until he is well and the known cause has been revealed. we are back to the basics and going to be another big haul up the mountain again. the biggest worrie is that with all that is going on they don't want him to have another tenotamy, when his muscles all seize up again.

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  • shaun heading back to starship

      11 August 2015

    due to the battle we are having with shauns infustions and his levels arn't balancing out, we need to go back to starship as none of the infustions are working...

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  • Shaun Is back home

      29 July 2015
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    Shaun and i are back home now, after a long month in hospital we have found what was the cause part of it was, He was doesed up with sodium citrate rather than sodium chloride... hard for us to come terms with this mistake right now under investigation.

    Shaun is now back to his normal self but we have to visit hospital twice a week to have alchole locks and bloods taken to make sure his levels are on the upside.

    Shaun was happy to go back to kindy today but still very tired of everything that has happened to him. We came so far now this has brought us back about 5 months. our goal again is to remove the Hickman line as it can cause infections and having tpn and lipids can cause liver and kidney failer.

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  • Shaun levels went down

      10 July 2015

    Shaun had to be rushed in to theater this morning as his levels had dropped, calcium, magnesium, phostphate, he had a pic line put in so he can get the fluids into him asap. Shaun had to have a breathing tube in while he came out and started to recover from this mornings episode.

    Shaun is awake now and not needing the breathing tube, but his levels are low, he will be staying in ICU until things settle down for him.

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  • Auckland starship

      9 July 2015

    Shaun has landed, in starship and now we have to wait and see what we need to do with his tests, pic line,bloods etc.

    Shaun needs a pic line in so he can get his nutrition levels back up again and be on tpn and lipids a couple night a week.

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  • Phosphate , elctrolytes, potassium, Transfusions

      3 July 2015
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    We are having to go to get a phosphate transfusion tonight, just when we have a good week and plans planned, things change...

    Shauns update is that he will have to have a pic line in, hes having tranfusions left right and center, hes anorexic, not eating, pale and just doesn't want to be in the hospital. we are in for a long time, thank you for everyone kind support, sometime i just can't think i can do this without the help of others.

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    • 08/07/2015 by Anna Priest

      We are heading to starship, he isn't absorbing the phosphate infustions, not keeping anything down, vomiting 3 to 6 times aday.

      Auckland here we come.. Shaun and i thank you all supporters supporting us.

      Please check out his page for further updates

      https://www.facebook.com/groups/317712571705403/

      Everylittle bit helps for us, we are in for a while...