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Emergency Starship picu hospitalization

  • Going downhill

      4 January 2022

    So today has been a pretty shit one.

    Once Bowden was transferred to the ward yesterday he started to deteriorate again. He need more and more oxygen. He also had some pretty intense bruising that had appeared before we left PICU to go to the ward. It got s lot worse so the surgeons on call asked for an urgent CT. We were expecting him to probably need urgent surgery so Daniel raced back to Auckland at 1 in the morning. Luckily so far he hasn't needed surgery but he is being closely monitored. Daniel has spent most of the daylight hours with him today as I was going on about 36hours awake.

    This afternoon the call was made to send him back to PICU because he was needing more and more oxygen to help with his breathing. We got him settled and spent some time there with him. They put him on high flow oxygen. Just as we were about to get into the car the team called and told us he would need to be put back onto a ventilator. So we raced back up to sit with him while they did that. I'm glad we did because he definitely looked a bit worried and scared.

    We will see what tomorrow brings but it looks like we'll definitely be here for a decent chunk of January.

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  • Starship day 6

      1 January 2022

    Bowden has had an ok day today. We had some good and bad news mixed in one.

    His kidney biopsy, that was rushed through the testing by people who weren't even rostered on and then stayed late, came back negative for Lupus. It doesn't rule out another autoimmune issue but we have crossed one thing off the very long list of possibilities. We are still waiting on some pending blood tests which might help with knowing if it's autoimmune.

    He's a little more aware today, nodding and shaking his head, he's still very well sedated, but it is nice to have that little occasional interaction with him. I've been helping with his cares, washing him, changing his sheets, looking after his eyes and mouth too. It's the closest I get to be with him and they have figured out I'm pretty capable.

    He has stayed off dialysis and they are very slowly starting to wean down the ventilator. He's got a bit on fluid in and around his lungs which is why they are being relatively careful.

    He had started feeling quite hot and a little sweaty this afternoon, no temperature though so something else random He's decided to throw at them.

    They are amazed at how quickly his skin marks with his lines etc touching him and he does have a bit of a raw spot on his bottom from pressure. It's not too bad at the moment but we are keeping a close eye on it. Bowden has been doing a great job in offering a crash course in EDS and FPIES to his nurses.

    We probably won't get to see any specialists until Wednesday because of the public holidays now.

    I plucked up the courage to ask how close we were to losing him and there are obviously a lot of variables but if he hadn't been picked up by Starship when he was on Monday we could have potentially had a very different situation to deal with. I'll forever be grateful to the anesthetist who made that call, and the team that flew him up here.

    Fingers crossed that he has a good night but I'm feeling unsure with this possibility of a temperature spike.

    Thank you to everyone for the messages of support and those that have donated to our givealittle page. Daniel and I are very appreciative.

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