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Thread: Felix's Mystery Respiratory Condition

  1. #73
    katanya Guest

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    thanks guys lets hope I am 8-[



    I am not sure how I'm going to sleep tonight

  2. #74
    Melinda Guest

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    Good luck Katanya, and of course the brave boy himself, Felix! I'll be thinking of you and hoping that everything goes well.

  3. #75

    Join Date
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    I'll be thinking of you & I will be around tomorrow if you need anything just sms me!

  4. #76

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    Hey there Katanya sweetie,
    Just checking in to see how you all are?
    I hope everything went ok today...
    Thinking of you...

  5. #77

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    Hi Katanya, just wanted to say I'm thinking of you, DP and the gorgeous Felix, hope things went ok yesterday.
    Take care...

  6. #78

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    checking in too... I hope everything went okay and you got some answers O

  7. #79
    mama mel Guest

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    Hi Katanya,

    I hope you’re just too tired to jump on the pc and this doesn’t mean you had to stay in… I hope everything went ok, pls let us know how it all went.

    Thinking of you… take care,

  8. #80

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    Hi Katanya

    yes we're all lurking around here to see how Felix went. Hope all's ok and you're just having a holiday somewhere computer-free.

  9. #81
    katanya Guest

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    Hi everyone

    unfortunately I am not holidaying from my PC by choice, Felix is still at the RCH due to an infection developed due to the broncialoscopy, and he hasn't been able to be off oxygen at night sijnce then, he is now much better (back to before) but they want him to have oxygen at home and they have to get some one to set it up and train us so we might be here for a few more days.

    I am on a internet kiosk at the Royal womens (next door to the RCH)and Felix is complainingbitterly about me being here socan't talk long, just wanted to get on and say hi and explain our abscence and let everyone know know that although it's been a bit harrowing being in here they got a few things from the broncialoscopy , not a cause but a clearer idea of what is happening

    undfortunately can't talk more felix just wont let me~!!

    Thanks all for your thoughs and hopefully we'll be home soon

  10. #82

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    Oh Katanya, huge I'm so sorry to hear that Felix has an infection! I hope he's better very soon.

    That's good that they were able to get something out of the broncialoscopy anyway. Hopefully it'll all help in finding a cause.

    Thinking of you!

  11. #83

    Join Date
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    Katanya give Felix a big hug and kiss for me! I'm glad he is getting better.
    I hope you are also doing okay.

  12. #84

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    Thanks for letting us know, Katanya. We hope you're all home really soon, and the bronchialoscopy proves worth while.

  13. #85

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    Oh Katanya, I'm so glad to hear from you (I was getting worried!), but I am very sorry to hear that poor little Felix has got an infection
    I hope the little tyke is feeling a lot better soon, please give him and yourself a huge from me.

  14. #86

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    katanya I hope that there are some answers from the scope and I hope Felix recovers quickly! *hugs*

  15. #87

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    Hey Katanya, big hugs to you and Felix and hope he is feeling better, and that you're doing okay too!

  16. #88

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    Katanya- hugs to you and Felix and your DP, hope things improve really soon and you are all home safe and sound.
    Best wishes Michelle

  17. #89
    mama mel Guest

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    So sorry to hear he had problems with it! I hope you're both coping ok in there..

  18. #90
    katanya Guest

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    Hi everyone

    we are still here at the hospital ](*,)

    unfortunately due to some really incorrect bad advice we are still waiting till tommorrow to get our oxygen..the biggest offender is centrelink..anyhow more about that when I am not paying $2 per 20 mins!

    Felix is doing well but the brocialoscopy while enabling the doctors to see what is going on has not provided the answers why?so we are now going to be coming back for a lung biopsy in 3 weeks, due to his age and size it requires opening his chest postly through keyhole but depending on what they need to do to how much thye have to cut him

    The specialist thing what the CT scan and brocialoscopy have shown up warrents a biopsy and the good news is that it is a final test, if we dont get answers but they can see clearly the scarring and inflamation they have seen on the scans then even without a dianosise they will trial him on anti inflamatory medication (like steriods or or types)

    We also have started suppilimenting but it is being done the way I wanted it, I express 100 mls 4 times a day and I add 1 scoop of goats formula and half a scoop of polyjoule and it makes the EBM double the calories! He drank 250 mls of it yesterday so it seems to being going well so far..fingers crossed this keeps us away from the nasal gastric feeds and another tube at night!!!

    So tomorrow they will set up the oxygen at home and train us how to use it..you cannot understand how anxious I am to be going home to my own bed it was a week today since we arrived!!!!!! We are in a ward with several very sick babies including one with a very rare virus, and others over the days who came through emergency with huge fevers or temps, meeting the other parents has been interesting but when a group of parents I shared the room with for a few days left I felt so sad and lonely..It really is the most intense environment, but I am lucky Felix is able to leave the ward during the day for a couple of hours at a time!

    Anyhow looking forward to being back on and chatting to everyone again!!

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