I’ve come to the conclusion that the human body just can’t sustain any heightened emotion for an extended period of time without trying to return to its normal state.  Fear, anger, pain, grief – these all fade with time because they have to.  Otherwise, we wouldn’t be able to continue to live.

We entered the hospital on Sunday June 20th, 10 days and a lifetime ago.  I’ve seen the delerious heights of renewed hope, only to plummet back to rock-bottom the next day as yet another piece of bad news is delivered.  Gavin’s recovery was off to a great start, he had an MRI the next day which showed no sign of remaining tumour, he woke right up from sedation, was extubated, and breathed on his own.  Then he talked to us and held our hands.  Hearing him say “mama” again repaired some broken bits in my heart.

But.  Then we realized that his swallow reflex had been effected by the surgery, we hope still that it will return to him in time, it just may take quite awhile and some intensive therapy.  This means that he cannot eat or drink except through an NG tube in his nose.

Then. He started exhibiting strange behaviour and was clearly in pain.  An emergency trip to CT showed hydrocephalus, a build-up of fluid in his brain.  His EVD, which drains excess fluid from his brain, and that we had hoped to remove already, was not working well enough.  His oxygen levels were low, and he needed to sleep with an O2 hood on for a couple of nights.  The danger of hydrocephalus has passed as long as his drain continues to work, but he spent two sleepless nights before recovering.

And then another CT scan showed us the next nightmare – a blood clot in the middle of his brain.  “We are on the knife’s edge right now,” said one of the neuro team.  As I’ve said before, no sugar-coating this stuff.  Our only recourse is to give him blood thinners, a bloody dangerous thing to do six days post-op.  Then the neuro team felt that he would benefit from having a PICC line put in, a kind of permanent IV in his arm.  Yet another dangerous and invasive procedure for him to go through, but he survived it, and is on his medication, and we will this clot to go away.

And now we watch, and wait, and hope, and hope to get through another night and another day.

7 Responses to “Hope”

  1. Sarah says:

    Wrica…my heart is aching for you because of what you have all been through these past ten days and full of hope for Gavin. wishing gavin strength to work through all of this…why does a little boy need to be tested in this way? your strength as parents is beyond measure. positive energy is still focused on Gavin, always.

  2. Marcella says:

    Erica. Camilla told me about Gavin’s surgery. I’ve asked friends of ours here in Norway to join in thoughts and prayers for him and for you all. My heart goes out to you.

  3. Colleen says:

    I can’t even imagine the pain and anguish you both are experiencing….I am really and truly sorry that this had to happen to your little love. I don’t know why life hands us some bad cards, and it seems to happen to the best of people- I don’t know…but it’s certainly NOT fair. You both are strong, and have a strong family behind you…
    I know that Gavin is aware how much love surrounds him, and this will help him recover- we all need him around! I hope and hope that this clot will pass and Gavin can begin a new healthy life and enjoy the summer months.

  4. Amanda says:

    Dear Erica

    Thank you for sharing your heart and journey with us. We are sending you love, light and healing for all of you. Your beautiful positive energy is what Gavin needs- you are an incredible mom.

  5. Jan says:


    Our thoughts and prayers are with you every minute of the day. Your writing is amazing and makes us realize life really can change in an instant. Love and prayers are constantly being sent your way

    Jan,Jay, Ethan and Maya Nobes xx

  6. Stacey says:

    My entire family is keeping all of you in our thoughts. We too hope and pray that Gavin will heal rapidly. Thank goodness he has such strong parents to help him along! Stay positive!

    The Leber’s & Bauer’s

  7. Jennifer says:

    Our thoughts have been with you since hearing of this heartwrenching news. You are all brave beyond belief. We are all praying and pleading to all the gods we know to help move past this horrible event. Keep strong.

    Are hearts are with you, love
    Jenn, Jason and Charlotte

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