Updates

I really just don't seem to have the energy to write at the moment. Ryley is home from hospital. He came home on Monday. He still isn't well, but we are very capable of caring for him at home, so now that his Sats are in the 90's we are confident enough to bring him home (they even got to 100 at one stage before we brought him home woohoo!) Plus he was starting to get bored, which is the sign to us that he is feeling better.

This hospital visit was pretty scary. He hasn't been this sick ever I don't think. He hasn't had pneumonia since he was 3 years old. That alone scares me.
This time, he just about stopped breathing which meant that the doctors had to give him prednisolone (steroids) which meant that it compromised the Ketogenic Diet, which then meant he could have had a massive seizure (because prednisolone sends blood sugars soaring). There was nothing we could do because it was a life threatening situation. We had to take the risk of him having a big seizure, because if we did nothing, well...I don't know.

He has started to bounce back a bit in true Ryley style, but he is still coughing and having a day sleep, so he is still not feeling that great I don't think.

Braeden is starting to become less insecure again as we have been getting back into a normal routine.

Thanks to everyone who has supported us throughout the last week. I am constantly overwhelmed by people's generosity and their words of support.

Next year is going to be huge for us. Not only do we have the conference to organise, but now Ryley has to have a sleep study done and investigations for asthma. We have to go back to having a regular paediatrician again which is not something I thought we would have to do for many years to come. We have changed paed's now though and are confident we are going to get the support we need to help maintain Ryley's health as best we can.

One thing is for sure, we are just glad we are home for christmas (as stressed as I am about that) and are hoping we don't have to go back into hospital for some time.

Comments

  1. I'm glad to hear Ryley is recovering - although I can't imagine what the whole experience has done to your nerves!! I hope you all have a lovely Christmas - and wish you a hospital-free 2011.

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  2. Anna, I am so glad to hear that Ryleyb is a little better and that you are back at home, I can only imagine how scary it was for you guys... Wishing you guys a safe and happy christmas... Love Mel , Luke and Ellie xx

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  3. I'm so happy to hear Ryley is home!! I'm also hoping for a healthy and hospital free 2011. Happy Holidays!!

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  4. Anna, I am thinking of you and really hope Ryley gets better as soon as possible and has a beautiful christmas. xx take some time to breathe yourself, it's really hard work being in that hospital environment feeling somewhat helpless xx love to you xx

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  5. Not a day too soon for your little guy to be home xx I hope the change of paed works out. Merry Christmas to you guys xo

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  6. I hope that Ryley is feeling stronger and that you all had a very merry Christmas. Ryley was never far from my thoughts during his stay in the hospital; I was so relieved and happy to hear that he was on the mend and ready to come home. The holiday season is not the time for hospital stays... actually, there is never a good time for those. Best wishes for a happy and healthy new year for everyone! xo

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  7. Thanks for the update. I'm so glad Ryley is home and hopefully still getting better.

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  8. Thank you so much for all your comments. The hospital visit has definitely shaken us and we are going to be worried now everytime he gets sick. But he is a tough little kid and we will just keep doing what we do.
    xxx

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