Saturday, 1 September 2012

The Waiting Game

The waiting continues, as not much has changed with Hope since our last update.  The doctors are starting to wean Hope off of the Milrinone and put her back on her regular heart meds.  They had her on both of them for a time, but it was causing her blood pressure to be too low.  They took a urine and stool sample to check for protein, as this would have shown if her nutrients were leaking and not absorbing.  She tested negative for protein in her urine and we're still waiting for the results from her stool.  The OT made a splint for Hope's arm to keep it straight - this is to avoid losing the PICC line.  So far it seems to be working and the PICC line is working well, so we're hoping we don't lose it as her veins are terrible.

Today the GI team switched Hope's diuretic meds in order to see if it would impact her swollen belly.  We haven't noticed anything so far, but are hoping it will start working.  We are truly praying that whatever is going on in her tummy would resolve over the weekend.  If she is still distended next week, they're going to continue delaying the heart cath and the second surgery.  We need her to get better, or the doctors to figure out why this is happening.

Sadie is back with us and seems happy to be around her family.  She asks often about Hope, but we've decided to keep her away from Hope until we're sure she's not carrying anything.  Sadie is running a very low fever as her molars come through.  She seems a lot happier today and has her appetite back, but we just don't want to take the risk.

Hope being back at the hospital here is tough.  When we were back in Calgary, it felt like we got to live at our house for awhile.  Now that we've returned, I feel like we never left and our time at home seems like it disappeared.  It feels much too normal to be here, everything is too deja vu for me.  It can be really boring here as well, as I find myself looking for games on my phone or trying to find something interesting on Hope's tiny tv.  The hours go by slowly some days and yet we don't want Hope to sit in her bed all alone if we leave.  We know from last time that it's easy to burn out here, so we're trying to take turns, take breaks and remember to take care of ourselves as well.

This is also a very sad place.  In Calgary I am reminded about the heartache of other families each time I go to the hospital with Hope.  When we go home, I don't have to live in that depressing environment though.  When we're here, we live with families that are all hurting for their children.  At the hospital we are surrounded by families that ache as well, and it truly breaks my heart.  We live in a fallen world and there is so much evidence of that here.  Please pray for us, that we would be an encouragement to others while we're here.  Also pray that we would stay positive, even when we see a lot of families that are having their hope stripped away.

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