Friday, November 9, 2012


Master S is in theatre.  The bravest boy I know.  He was soothing himself by repeating over and over "I'll be asleep and then I will wake up, I'll be asleep and then I will wake up.

Bloods still at the lab.  Over 100 apnoea's in a 9 hour period.  Oxygen saturations dropping to 60.  He has no appetite and is sleepy in the day.  Airways obstructing, hence tonsillectomy and adenoidectomy.

 Very interesting reading here on page 35 discussing obstructive airways in Beckwith-Wiedemann Syndrome.

I'm not feeling like vomiting now.  They will come soon to the parents lounge to tell me he is in recovery.  He is so brave.  Minky and Extra and Reco and Mr Whoo were able to accompany him into theatre.

I think I may right a post about hospital stay hints and tips.  There's lots to know... Especially that of how great the weight loss program is here.  It's called stress.

Love Rach x x

It's ten minutes later. I'm not feeling brave.  I feel like swearing which reminds me of the movie the kings speech.  I worry.  What if he bleeds out.  What if something goes wrong.  What if the bloods come back and his afp is through the roof.  What if his heart dropping to 47 means he does have a cardiomegaly like 35 percent of Beckwith kids and when I have requested they check his heart and don't listen to me shit will hit the fan. If I didn't video his apnoea they would not have believed me.
They didn't anyway.  Then they saw the video and agreed whole heartedly.  Shit.  He's still in theatre. My beautiful beautiful boy


We are in a new ward now.  My boy is sleeping.  Tonsils were huge and sent to pathology for screening.  Adenoids stayed in, not as large as anticipated.

We are monitoring his heart and breathing, new nurses noted my concern of heart abnormality.

Xxx Rach


  1. Hi Rach

    I hope the surgery goes well and that S comes through it really well. I also hope that this indeed solves his problems and that he can now get better. Know that you are in my prayers constantly.


  2. hey. i'm holding you in my heart and thoughts right at this minute. he is brave. YOU are brave. keep breathing.
    xx Sarah

  3. A strange person answered the direct line you gave me and your phone is off.
    I love you.
    And I'll try again later.

  4. What a lot for you all to go through, you are a strong woman. I hope you will all be enjoying each others company at home soon.

  5. Hi, I pop in to read your blog from time to time. I am sorry to hear your son is in hospital. I well understand, my little boy was not quite one when he had his tonsils and adnoids removed, we have since spent time at the RCH for other illness. Unfortunately we also know the journey of not being listened to, and the strength it takes to advocate in the midst of worry and stress. The patient liason officer can be a good person to call on if need be. I wish you strength and fortitude during your time in hospital and hope your stay is a short one.

  6. Thinking of you both, and hoping for a speedy recovery for your brave boy... x

  7. Love, hugs and prayers for all of you. May your sons recovery be swift.


  8. You have both been in my thoughts this week xx



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