Thursday, 9 May 2013

IV Marathon

Hope's IV finally went after what I believe was 13 days.  She has now been on oral diuretics for last 24 hours as a result.  The grunting has returned and we're hopeful that she'll be able to adapt on her own and not need a new IV.  Hope had diarrhea last night, but only once today for me.  They changed the concentration of her feed in the morning, that could have been the solution.  Hopefully her tummy will settle out and we won't have to lower her calorie count anymore.  That little lady needs to get a lot bigger, it's better for her health.  It also opens up our options for Hope.  She needs to get bigger in order to receive certain heart interventions.  She's still so skinny, I can feel her entire spine when I pick her up.

Hope was screaming when I walked in this morning, I could hear her down the hall.  She stopped as soon as I picked her up and I felt badly that she was so upset.  The nurses tell me each morning that Hope is miserable until I arrive.  I wish I could be there at 6:30 when she wakes up, but then I would miss out on sleep, and my morning with Sadie.  There is just no easy answer.  When Hope was on the ward, we had someone stay overnight with her.  In the PICU there is no bed for someone to stay.  We could have them bring in a pull out couch, but it's not an ideal sleeping environment and we feel badly asking someone to stay.

Hope had to have blood taken from a heel poke today.  That is how they run a blood gas.  Hope is poked with a needle like a diabetic would be, but they squeeze the blood out and into a tube.  Hope screamed so hard, that she slept for over 3 hours after it was over.  I can tell that her body is so weak and it discourages me.  Physio is difficult as I feel badly torturing a child who's life is already so tough. I know that the end result is worth it, but right now it feels mean.

I have only 5 boxes left unpacked.  Mostly of things I don't want or need to unpack in the garage once we get around to building some shelves.  I made a list this morning of handy man things I need Shawn to do.  I'm trying to pace myself in bugging him about it all as he works all day and isn't thrilled to work all night afterwards.  Fair enough!  We have the things we need; beds, towels, kitchen stuff and places to sit.  We may take a while to hang things on our walls, but that happens often when people move!

Continuing to wait for a heart.  Please continue to pray.


  1. Is it possible to just have an early morning shift for cuddling Hope rather than an all night shift? For example, from 6-9 am? Just wondering...

  2. Praying for her weight gain today...

  3. If I lived closer I would go cuddle with Hope Every morning!! praying she gains weight quickly and no more IV needed...also rest for you each....and then a new perfect heart for Hope soon

  4. Early morning cuddling sounds like a great idea. You don't know me and I live too far to cuddle anyway but I'm a friend of Holly H who is friends with your friend Alyssa who cuddles Hope sometimes. I'm following and praying for Hope and for your family, as best I know how.
    Sending love and light,

  5. Your last comment made me smile. When we move - 24 times in the last 29 years - the first thing my husband does after the beds are up,is hang everything on the walls. Says it makes it feel more like home. Praying for Hope and your family.