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hi guys. i havent been posting a great deal recently cos michael has been alot better than 6 months ago so weve been going out on day trips and visiting family etc etc, that is until 6 weeks ago. the cons stopped his thephyllin because he was ""reasonably well controlled"" since starting the azithro and because it was affecting his behaviour majorly. anyway, since then hes been more symptomatic and the past two days have been really bad (not bad enough to be admitted but bad enough to get no sleep due to coughing fits and sats monitors beeping etc) his sats havent gone above 94% all day and im concerned about tonight when he goes to sleep, it may sound very selfish but its my 21st birthday tomorrow and i really dont want to be visiting him in hospital on my big day! i have a huge party planned and i do ant him to be well enough to not only go, but for me to not worry about him!

anyway, this whole incident seems to have us back at square one...waiting to be bad enough for admission, then waiting to be well enough for home etc etc. im on a total downer about it cos were doing soooo well, he was only needing one or 2 nebs a day and other than the anaphilaxis, he had o admissions since march. now hes been on 4-6 hourly nebs since the week after we stopped theophyllin and the slipperyslope just seems steeper this time!

sorry for moaning guys...hope this finds the other kids well(ish!) and the parents unstressed!

7 Replies

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  • Kirsten

    I do hope you manage to get to enjoy your birthday, you do deserve it. I am so sorry things are going down hill for you and Micheal. May be it is worth ringing the consultant and asking him what to do, see if he wants him to go back on the theophyllin or get Micheal appointment changed so you can see him earlier.

    I know this doesnt help you this weekend or for the party but I will be thinking about you and keeping everything crossed hoping you have a good time.

    HAPPY 21ST BIRTHDAY KIRSTEN

    caroline

  • Happy Birthday Kirsten

    I hope Michael stays well enough for you to enjoy your big day. I agree with with Speedy get in touch with yr sons cons as soon as possible.

    Would you consider putting him back on the meds before talking to the cons ?

    Keep us posted thinking of u.

  • HAPPY 21st BIRTHDAY

    Hope u have a fab day.

    love and huggles

    Rusty

  • Happy 21st Kirsten!

    I really hope michael stays well enough for you to have the day you deserve :-)

    I wont repeat everything thats already been said but No one knows Michael better than you and his medical team will know that as well so if you think restarting meds before you see cons will help then I would definatly consider it.

    Have a great day and keep us posted on how michael is doing.

    Julie x

  • Happy belated birthday Kirsten. I hope things have now settled a bit and the party went well. You are not being selfish at all, we all need some me time now and again.

    Love

    Steph xxxx

  • well, michael went in on friday night, needed o2 overnight and 2 hourly nebs. the nurses sang happy birthday to me at midnight and put balloons around the campbed while i was sleeping. it was really nice of them!!!! my mum also brought ALL my pressies along to childrens ward in the morning (on a wheelchair none the less) so that michael could see me open them.

    he came off o2 at 2pm and we convinced the doc to discharge him so he coud come to the party...he was there for an hour before he got adjitated with all the pred and nebs so my mum took him home so i could celebrate properly (ish!!)

    hes still very gunky and coughing alot, cant get his sat above 94% unless im constantly doing physio, they went very low last night(87%) but the doc i spoke to (who doesnt KNOW michael) told us that if they went up when we woke him, there wasnt any point taking him up. not sure what the logivc there was but hopefully the steroids will start to work. hes on a SLOW reducing schedule now to get him back down to 5mg by 20th sept.

    thank you for all the birthday wishes, i tell you , it could have been worse!!! at least he got to go, it was a ""grease"" themed party, he was Danny!!!! cute as anything!!!!

  • Kirsten, how is michael? Hope he is doing better.

    Glad you had a good 21st.

    Em x

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