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Support for the Winter Family

  • A set back

      7 April 2015

    After some time at home Joe developed a chest infection and after a few days in Wellington hospital was flown back to Starship in Auckland. He was responding well to antibiotics and seemed to be on the mend. Yesterday afternoon he crashed and at 9pm last night was moved to PICU, where he's now sedated and ventilated, waiting for his 3rd open heart surgery to replace his mitral valve, which they tried to repair. It is a devastating turn of events as Joe now has to start his recovery journey again.

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  • Home!!

      31 March 2015
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    It's a weird transition, coming home. You go from having pretty much a single focus - everything you do revolves around getting your child out the other end in the best state possible - to the normal routines (that you crave while in there) of home, family, work, school. It's quite overwhelming. You think, as you're heading home, thank goodness, we can be normal again. I suppose, naturally, it's not quite that simple. It's still lovely being back.

    As for Joe, he is happy to be home. One doctor said she thought having his siblings there had been the best medicine for him. I think she was probably right.

    What next? His surgeon thinks this repair will last another 5 years. So, he'll be looking at a valve replacement by 10. She also thinks she can do more to his left side which is quite obstructed - she just didn't have time this time with 4 hours on bypass being long enough. Hopefully we'll have time to prepare everyone next time.

    Although we knew he would have Open Heart Surgery this year, we were not expecting it in the way it has happened. But here we are, out the other side!

    Rebekah Winter

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  • Nearly home...

      30 March 2015
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    No news is good news and we are heading home tomorrow! (Or at least I'm packing - that's the plan!). Pretty sure there is nothing stopping us. We even had a wander today to the museum to find some eggs in the Big Egg Hunt.

    Joe has made some friends in the house which has helped and only needs to odd reminder that wrestling isn't a good idea yet. He did get a ball to the pacemaker, which stopped play pretty quickly. Looking forward to updating from home tomorrow! (Hoping I haven't jinxed us by packing and giving all our food away :))

    Rebekah

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  • Smoothies and pirates!

      25 March 2015
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    It's been a good day. Joe's been a lot more independently mobile. He did his best to eat some dinner but it all came back up again. Not sure what's going on there. Thank goodness for Subway Smoothies!

    He may get his ng tube (nasogastric tube which goes through the nose, past the throat, and down into the stomach) out tomorrow and if all continues to go well he may get ward leave to stay at Ronald McDonald house for the weekend.

    The photo is of Joe making treasure maps and sword fighting with radio lollipops volunteers.

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  • Settling into the ward

      22 March 2015
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    Jon and Joe are safely snuggled in their own room on the Kids Heart Ward. Although he's still under HDU care they thought it'd be nicer if he gets his own room.

    He's been up and down - obviously in incredible pain at times. Any lifting around the arms, chest and back causes great pain. His legs are aching from lack of movement and he is so skinny! Not nice feeling that spine and ribs sticking out. Joe's tummy is hungry but he doesn't really want the food he asks for (pizza!) and sleep is hard - for many different reasons! He did walk babysteps with support back from the loo. After surgery this is an important part of recovery for Heart Kids. Getting up and walking/moving is often encouraged in the first few days after. Despite his pain and ups and downs Joe is doing amazingly!

    Some sponsors at Ronald McDonald house are putting on a trip to Kelly Tarltons and out for dinner on Monday night which the Joe's brother and sisters are looking forward to. If you are ever looking for a worthy charity (search Ronald McDonald House on Givealittle)- what we are provided with here is incredible. The people working here will give you the clothes off their back if you need them. I wish no one had the need for this facility but everyone should get to see what is offered to families in their time of need.

    Thanks again for all your lovely messages. Can't say it enough. Even if we don't reply, we've read them and they help!

    Rebekah Winter

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  • Going to the ward!!

      21 March 2015
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    We're going to the ward!!!! Lines coming out and cracking jokes with his nurse! Yeeha! Got a twinkle in his eye and a cheeky grin.

    Have a look in the gallery at a picture of Joe's little bag. He takes pride in wheeling it around with all his gear. It has been sitting lonesome and unopened for a week. Looking forward now to getting it up to the kids heart ward.

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  • Major step forward

      19 March 2015
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    Joe has reached a major milestone today with the tubes to his lungs that were part of his life support being successfully removed (extubated). Extubation refers to removal of the endotracheal tube (ETT). It is the final step in liberating Joe from mechanical ventilation. This was attempted last Saturday... didn't go well and gave everybody a fright. There was real relief today when the procedure was successful. Shortly following this Joe opened his eyes and responded with nods a shakes to questions from his dad Jon before going back to sleep. It is a massive relief for everyone and although he still has a long journey, this is a key milestone in his recovery. Later, Jon managed to snap a photo of the thumbs up!

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  • Four days after the operation.

      17 March 2015
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    Joe is in a drug induced coma to give his body time to heal. The doses have been very gradually reduced to allow his body to begin to support itself. There have been some setbacks followed by milestones. It is a long journey.

    At the moment Joe is responding to voices. Stretching and nodding when asked if he was sore, rolling in the directions he is asked to, squeezing his mum's hand to answer questions. Still in an out on his drugs but showing good signs.

    The Winters and their extended family want everyone who has been so generous to know that they are deeply moved and truly grateful.

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