WHERE is the STOP button?!!!!!

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    Just when we thought our journey with Abbie’s poor health was allllllll over,
    we’ve just spent the last 2 nights in one of these sparkly white rooms again….

    IMG_20120805_094327.

    And quite frankly it sucks!

    So much for hoping that ear surgery & grommets would be our magical solution to great health and an end to all Abbie’s high fevers…

    It’s a really long story but basically Abbie has been running really high temperatures again since last Wednesday, with no other obvious physical symptoms.
    My first instinct was that she had been very unlucky and was just coming down with a separate virus, unrelated to all her prior problems. She was already on post op antibiotics so I knew there wasn’t much chance of infection. But when she woke on Wednesday evening burning up again, dry choking and severely miserable I took her to emergency to have her checked out for post op complications for peace of mind.
    They agreed she was miserable but agreed with my instinct that it was a new virus and she would more than likely develop some other symptoms in the next 24 hours.
    So we went home on strong pain relief to await further developments.
    It was an extremely sleepless & unpleasant night, as were the following days.

    Cue Saturday; there had been no improvement in her temperature but no other new symptoms to indicate it was definitely viral so I took her back to my GP for another check. Especially as it was starting to feel all to familiar, given that by this stage she had been running a temp like this for at least 40-50% of the last 6 weeks!!

    After assessing her history our GP requested bloods, which was my next request too.
    Since it was Saturday we had to go to the hospital to get said bloods.
    Well…
    one thing led to another and soon going in for a blood test instead resulted in her being admitted for further investigation.

    Not feeling so flash...

    And that’s where we have been for the last 2 days….
    Having hourly obs, a myriad of different tests and numerous consults with the senior paediatricians to try and discover what is going on.

    She has been tested for just about everything under the sun including bacterial infections, glandular fever, auto immune diseases, leukaemia, lymphoma etc etc etc…
    (*** Scary words alert – Cue Mummy-brain-explosion!!***)
    So far though, other than showing that she’s anaemic {again}, the blood results have all come back in normal ranges, indicating that it is most likely to be a viral infection and nothing more sinister.
    Phew.
    A little bit anyway.

    So this morning we have been allowed home as we wait for the rest of the test results, because now everybody’s suspicion is back to that she’s just most likely got a severe case of influenza. And as she is drinking well and showing no signs of dehydration then they are confident I can document and monitor her fever just as effectively at home as they can in the hospital.

    And now we wait…
    for signs of improvement and the rest of the test results to come back
     – whichever comes first really.

    We have an appointment next week to discuss her immunology test results & the rest of the longer taking ones, however, they have instructed me to take her straight back to emergency if there is no reduction in her fever by Wednesday & they will reassess her needs from there.

    Meanwhile I am trying to remain optimistic…

    Most of the time I have been ok, but I must admit that I do have my down moments where it’s hard not to focus on the worst outcomes.
    Much of that depends on Abbie’s appearance….
    Abbie can be seemingly well for a few hours at time, chatting away & watching tv happily…. especially when she’s on nurofen. It seems to make her feel loads better.
    But a great portion of the day she spends very “flat”, burning up in bed and only interested in grunting responses or crying and wanting Mummy.

    Overall there has been no real improvement in her fever for 6 days now and it is very hard to separate in my brain what’s going on now with how long she’s been sick with a persistent fever before the surgery.
    And as a Mum you can’t help the occasional niggles that go on in the background at times wondering the worst.
    It’s just not easy to see her like this!!
    Especially as she’s baffled all the doctors and we were all tempted to call in House.

    So we wait.
    And we pray.
    And we wait some more.

    Until then, if you excuse me, all blogging, emails & internet activity will be suspended until further notice….
    I will be reading your comments/emails but I will not be responding until we have some improvement in the situation.
    I know you’ll understand!

    41 COMMENTS

    1. Oh Kat, poor Abbie, poor you! I really pray that someone can work out what is going on and work on getting Abbie much better. My little one has been getting one virus after the other in the last few weeks and it has been hard to deal with the extra demands, but I have only had them for a short period of time plus a husband who comes home at night and is here on the weekends. I wish there was more I could do to help you.

      dxx

    2. Kat, my heart goes out to you as you deal with this impossible situation. It seems impossible that with the advances in medicine today, that there could be something wrong that docs cannot pinpoint and fix right away. My prayers are with you & your sweet baby girl.

    3. My heart goes out to you Kat,I know from personal experience how hard it is to have a chronically sick child.How for every step forward you seem to take one back. Time and patience, not easy, will see you through. When you are really up against that wall do something like kicking a football as hard as you can, or slam a tennis ball around, the release is wonderful. I will keep you all in my mind. Pam

    4. I would have her tested for allergies. It could be something as simple as there is something in the house that she is allergic to. Also, you need to find the cause of the anemia, and that will tell you the cause of the fevers too. Don’t rely on the Docs knowledge alone, research it yourself. I saved my husbands life doing just that. When I told him to get two simple blood tests, that I had been telling the docs for 8 months something had to be wrong there, we did some 20 plus blood tests, I thought the doc did the two I had done. They did not do them. So when we told them we wanted them done, they said they wouldn’t tell us anything……..yeah right. They freaked when they got the results and told us to redo them asap. When they came back even worse, we went straight to a hemoglobin specialists. Turned out he had a very advanced case of colon cancer at the age of 43. He is fine now and we have a new doctor too. So take all your symptoms and do your own research. Google is great. Have everything you find looked into and process of elimination. I would start with the allergy tests, and a PET scan for starters. Anemia will cause the fever, so what is causing the anemia……the blood or blood cells have to be going somewhere for some reason. Good luck and let us know what you find out. Did find one site that mentioned PFAPA as well. You know more of what her symptoms are though. Having a sick child is no fun at all.

    5. Oh Kat, that’s not good. I pray that all these infections are done with now. Your poor daughter! I wish I lived nearby so I could help you out. I hope your family is helping and that you have good news to report soon.

    6. Kat, I can’t imagine how you are dealing with all of this….my heart goes out to you and your whole family. What a worry! I hope a resolution can be found super fast and Abbie can soar to recovery in no time flat!

    7. Oh poor little girl, and poor you, I just can’t imagine how awful and also frustrating it must be for you right now. Hoping for an improvement in the situation soon and a return to her normal self. xxx

    8. How frustrating not to know what this is, and how difficult to watch your child feel so crummy. I hope you are able to discover the reason soon! Stick with investigating and trust your instincts! Hope she feels better soon!

    9. We’re following you from afar and praying for the best. You must be absolutely wrung out. Abbie will probably never remember this time, but I’m sure you’ll never forget. Be fierce and trust your instincts!

    10. Oh, honey. I don’t know what to say or do for you. It’s been an awful run. Know we’re all sending healing thoughts your way and better days are coming.

    11. Oh, Kat! my heart totally breaks for you and for your little one. I hope she starts feeling better soon and you’ll get some good results from all the test. You and your whole family are in my thoughts and prayers.

    12. Such a heartbreaking read. I really really hope that she gets better soon and that there is nothing sinister going on! Sending get well vibes in your general direction!
      J x

    13. That’s so awful for her to go through so much at such a young age. I hope things improve for Abbie and she gets better soon. Sending best wishes and positive thoughts =D

    14. Your poor little Abbie has had such a rough run of it. Sending prayers for healing for Abbie and for answers, peace, calm and rest for you. I can hardly imagine how hard this must be for you and Mr Flutter.

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