Hard day’s night

We’ve shed more tears today. More than yesterday, more than Diagnosis Day. Gavin went back on the oscillator around 1am this morning.

It is excruciatingly heart-wrenching to be so close to being free of ventilators only to go all the way back to where we were after the biopsy.

Gav has not been muscle relaxed (pharmaceutically paralysed) like he was last time on the oscillator so he has been able to express his frustration more. The breathing tube is below his vocal chords so he can’t make sounds and there’s nothing more distressing than seeing your child silently cry.

The hardest part of today was the discussion we had with his doctors when they told us that if he doesn’t improve in the next few days that they want to try Etanercept. The drug is extremely risky with a low success rate, but it may be our only shot.

We need the steroids to work. They must.

We all have to believe in our little warrior and his invincibility. He’s going to stand up and fight for his lungs and prove all the doctors wrong once again.

32 Responses to “Hard day’s night”

  1. Melanie Parkes says:

    HE WILL HE WILL HE WILL – I’m praying like I have never prayed before!! I love you all xoxox

  2. Nicole says:

    We believe in him and are praying for his recovery day and night. We love you guys and will continue to pray until he gets better!

  3. Tim says:

    Gavin has tonnes of people pulling for him in addition to his own obvious strength. Stay strong!!

  4. Heather Ward-Price says:

    I really don’t know what to say except you are in my thoughts and prayers…

  5. Jen says:

    Sending all my prayers and positive energy your way!

  6. Aunt Karen says:

    He IS going to prove the doctors wrong. All my friends and I are sending prayers and strength. We are not pleading, we are acting. love you Craig.

  7. Cherie says:

    FIGHT GAVIN! FIGHT! We are all behind you and sending you strength and prayers. xoxoxo Cherie and Stephan

  8. Nadia says:

    From the depths of our hearts and souls we pray every day for Gavin to recover, and for the strength you and Erica need going through this ordeal. We love you.

  9. Monica says:

    I am praying and praying for strength and recovery. I echo all of the sentiments sent your way. You have a united force of love with you.

  10. Jan says:

    I am praying and praying and hoping for a christmas miracle for little gavin…Jan

  11. Susannah says:

    Making many wishes for Gavin today. He is in our thoughts, prayers, and hearts. love and strength to you three. us

  12. Kelly says:

    Monica said it best – you have a united force of love, energy and healing behind Gavin and both of you. We are all rooting for Gavin’s improving strength and healing.

  13. lisa says:

    He WILL get better. I just know it! Fight, Gavin, FIGHT!!
    Your in our thougths and prayers everyday.

  14. Amanda says:

    We are all fighting for you Gavin. We are cheering you on and know you are going to get through this challenging time sweet boy. sending you lots of love, hugs, healing and prayers.

  15. Kiki and STella says:

    Come on Gavin!! You can do it buddy . Be strong Mom and Dad .. So much love and support being sent your way

  16. Lisa says:

    We are sending you love and good energy and a lot of prayers. And our baby Max who was also at Sick Kids ICU sends his healing energy too..big hugs from us all!

  17. Kathleen says:

    To Gavin and his family…

    I only know you thru my dear friend Amanda but my heart knows you well. The strength I’ve seen and now have gained from following your journey it astounding! I walk silently beside you all. Many blessings and prayers are sent your way. Loving deeply and truly, Kathleen

  18. Ramona says:

    I am constantly holding a prayer and wish for Gavin in my heart. A friend of mine has also arranged for two spiritual prayer circles to include Gavin by name in prayer and ceremony. That makes ten women holding Gavin with love and courage.

  19. Nitasha, Satnam & Niemh says:

    I will pray for Gavin, Mom and Dad to all have the strength and courage you need, everyday until he gets better, and he will get better. You have my love and support.

  20. Nitasha, Satnam & Niemh says:

    I pray for Gavin, Mom and Dad, everyday until he gets better, and he WILL get better. You have our love and support!! xoxo

  21. EVette says:

    A prayer for a full recovery was given to the rabbi in Brighton, England today— I too follow your journey and am always in awe of your amazing courage and strength. Endless and countless blessings to you all.

  22. EVette says:

    Just spoken to the rabbi– and Gavin’s name is going to be read out at the big synagogue in London this evening…

  23. Really drawing on every last bit of strength today, and sending it all to you and Gavin. Every breath is a prayer for your family today.

  24. Erin says:

    Gavin will triumph and soon all this agony will be behind you!

    Love, light & healing


  25. Kirsty says:

    I am a friend of Erin’s and have been following your story through her. While we have never met, please know that my family is keeping yours in our thoughts and prayers and sending lots of health and healing vibes out into the world for you. I too have a young son named Gavin and my Gavin and I are hoping for a complete and triumphant recovery for you and yours!!

  26. Mairi says:

    In prayer.

  27. Paul Rance says:

    Thinking of you all and sending our love, i have got my mum to put Gavin in her wish box and she is pretty good at making wishes come true.X X x

  28. Jo says:

    I’ve heard about Gavin’s brave battle through my son-in-law Paul Rance and will be thinking and praying for you. Wishing you love and all God’s blessings. x x

  29. Jennifer says:

    I am sending out messages to all that I can, to join in giving Gavin the strength to get through this. We are all fighting and praying with you little Bean. love J

  30. Shawna says:

    I am a friend of Amanda’s. My thoughts and deepest prayers are with you brave little Gavin. The human spirit is stronger than anything that can happen to it. ~C.C. Scott

  31. Michael says:

    We’re praying for you. Love Michael, Sarah and Yona.

  32. Suhayla says:

    He will . Each and every single heart beat is a prayer for u , may u be given the whole strength needed

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