Sunday, 6 May 2012

Moving, just slowly.

Today we made some progress, but weren't able to get as far as we'd hoped.  In the morning a surgeon came and removed Hope's stitches, as well as her chest tube.  After rounds, our nurse removed Hope's Foley catheter as well - she is peeing in a diaper once again!  The next step was supposed to be the breathing tube, unfortunately Hope is still not ready for that to go.  The CT scan showed a lot of mucus build up in the bottom of her left lung.  Today, they put Hope in the "prone" position, chest down and back up, in order to clear some of this.  She had to stay like that for 12 hours, but wasn't a huge fan of the idea.  As a result, they had to sedate her and eventually paralyze her temporarily as she wouldn't stop fighting them.  She has another 4 hours left in that position and, so far, it hasn't appeared to do what they were hoping it would.

They have told us that Hope will not be extubated tonight and they'll assess her again in the morning to see if tomorrow might be possible.  She's still not ready and the junk in her lungs is making it a lot harder for her to breath unassisted.  The topic of Calgary did come up today, and the doctor said he didn't see why we'd need to be in Edmonton too much longer.  He felt that Calgary was more than capable of continuing our care, as we didn't have any surgical needs, thankfully!  He suggested we might get back to Calgary sometime in the next week, but we're trying not to get our hopes up too high.

Visiting with Hope isn't quite as comfortable as it usually is.  Hope had a swab done on May 1st that came back positive for the common cold virus.  As a result, she is now in isolation and everyone that comes into the room has to put on a gown and mask.  We're hoping this won't last too long, but we've been told it could be a few days before the isolation rules are lifted.

Tonight before we left the hospital, Shawn and I were alone with Hope and her nurse.  Our nurse picked up the blanket under Hope and allowed us to slip our arms underneath so that we could give her a makeshift hug.  I haven't been able to hold Hope for over a week now and that half hug felt incredible.  I am dying for her to be extubated so I can snuggle with her again.

The medical staff are having trouble balancing Hope's fluids   She seems to be too wet or too dry all the time.  Please pray that they are able to find the perfect balance as she swells up with too much fluid and her sats plummet and her eyes look sunken when she's too dry.

I've spent my evenings working on my scrapbook of Hope notes and it gives me so much joy to see how many people are praying for our little fighter.  I also dream about showing it to her when she's older and teaching her about the God that loves her so much and has been walking with her through this difficult journey.  Thank you for taking time to send them, it's been very therapeutic for me.

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