Extreme Highs and Lows

The last 24 hours has been one of the most intense roller coaster of emotions we've experienced yet.   I am typing this as quickly as possible as my migraine is not enjoying the computer screen.  There is simply too much going on to not update and have you all praying more specifically.

It started early this morning just after midnight.  Shawn and I were asleep in bed, had not been asleep for long but had finally managed to fall asleep.  Our home phone rang and Shawn managed to get there before I could.  I ran next to him saying, "Oh my goodness!" over and over.  He handed me the phone and I anxiously answered, hoping we were getting a heart.  Unfortunately it was the Calgary hospital calling with bad news.  Hope had been vomiting blood and they would be holding her feeds for the night.

This morning I arrived exhausted.  Although I had a shower, I heard more today about how tired I looked than I normally do.  I simply did not sleep well after the discouraging news and the extreme high of thinking we were getting a heart, to the low of realizing there was no heart and Hope was getting worse.

Hope was extremely sleepy all day today and less grumpy, but not herself.  Her feeds were re-started and after only a couple of hours, the vomiting returned.  The blood has not increased so we don't know what that is from at this point as it wasn't severe enough to warrant a great deal of testing.  Her feeds were rested for a while and restarted.  The vomiting returned and Hope was not happy.  The feeds are coming back undigested and clearly not tolerated.

This evening just before 7pm the hospital called once again.  Hope continues to not tolerate her feeds and they needed to make a decision on what to do.  This morning Hope weighed in at only 12 pounds. That does not leave her a great deal of weight to lose and we need to guard every gram on her body.  The doctors did not feel that putting her on IV fluids through the night was safe with her being so skinny.  They decided instead to up her heart meds.  That doesn't sound like a big deal, but you can only go so high on them and they reserve this tactic as a last option.  Hope's dose was increased by 50% of her previous dose.  If this works, we have more time.  If this is not effective, Edmonton will be contacted in the morning and there is a good chance we'll be heading to Edmonton for the Berlin heart. This is obviously devasting news and signals the end of our battle with Hope.  If Hope does not get a heart quickly, there is nothing more they can do.  Although the Berlin heart may give us more time, it is also extremely dangerous with Hope's clotting tendency and how tiny she is.

Just before 10 tonight I found out that one of Hope's heart friends is getting a new heart tomorrow morning.  You would think I would feel jealous and frustrated.  I actually feel slightly encouraged.  I have felt all along that until Caleb got a heart, Hope would not receive one.  It is more complicated to match hearts than simply the number of people on the list, but I always felt he would get a heart first.  Knowing that his heart has arrived, I feel like Hope's heart will not be as far away as I had thought it would be.

We need a miracle.  We could truly use a heart by morning if possible.  I know that God is in control and is watching over our family.  I pray that his plan is for Hope to have a new heart before she needs a Berlin heart.  Please join us in praying for a miracle.  We are also praying for a heart for Curtis, pray for him as you think of Hope.  He's much older than her and needs a bigger heart, but is in great need as well.  Pray for the parents of North America.  I read an article this week that talked of the lack of organ donors and how the problem is getting worse and not better.  I pray that Hope's story not only raises awareness for her, but for everyone that will need an organ in the years to come.