No End to Bad News!

I wonder if there are days that people read the blog and imagine it is all make believe.  How could such a little girl go through so much drama in 6 short months.  Sometimes I dread writing the latest news as it makes it more of a reality to me.  I am forced to remember that this sad story is not from another family, it's our sweet Hope.  Today is another one of those days, one that I wish was filled with more good news and optimism.  

Hope made the move up to ICE (the step-down unit from PICU) around 4pm yesterday.  I was incredibly exhausted from the long, stressful days in PICU and only stayed with her through the transfer.  I left the hospital around 5:30 to get home for dinner and a much needed relaxing evening.  

This morning I arrived at 8am and found Hope asleep in her crib.  They told me she'd done well through the night and seemed to be tolerating her feeds.  When she woke up we measured her tummy, 48cm.  I asked the nurse to check her NJ tube to be sure her food was not pooling in her intestines.  Sure enough, her NJ tube has not been the solution as her intestines were FULL of feed and her food was stopped once again.

Rounds began shortly after and they began discussing the next steps for Hope.  If we're not able to feed her, she needs nutrients through Lipids and TPN (these are liquid nutrients that were given when Hope was born and include everything her body needs, but run through the veins and not the digestive system.  These are usually run through a central line or PICC line.  Unfortunately, this is not an option for Hope.  They've decided to run these through the IV in Hope's foot.  This is extremely dangerous and will keep her in the ICE for the next few days for sure.  If the IV is lost (which happens VERY often with Hope) and the concoction continues to run, it will cause terrible burns to Hope's skin.  Just writing that makes me cry as I'm fairly certain it will happen.  They will watch the IV as closely as possible, but we've seen human error is a reality of life in the hospital.  Please pray that the IV is not lost and her skin is not burned.

They believe Hope has NEC (Necrotizing Enterocolitis), it is an infection and inflammation that can cause the destruction of the bowel.  If they continue to feed Hope while her bowel is clearly striking against it, it could cause permanent damage to her bowel and result in her death.  She is now going to need to receive the IV nutrients for at least 5 days of fasting.  She will also continue on her antibiotics to attack this infection.  They feel that this is in correlation with her liver issues and the clotting there.  They are not 100% sure that this is truly what is causing Hope's bowel issues, but are going to treat it in hopes that it will work.  

I was told this morning that Hope is simply too fragile and will not be discharged before surgery.  She is not allowed to go on passes and will be here until November 7th.  Two weeks today she is scheduled to go in for her Glenn.  Please pray that she is not bumped continually and that her surgery will happen on time so we can at least get back to Calgary.  Once she's had the heart surgery and is stable, we'd be transferred to the Children's Hospital in Calgary.

After speaking with the liver doctor about Hope's MRI from last week, they've confirmed that her liver issues will take a VERY long time to resolve and will not be any better if they delay surgery.  This is a comfort for us to know as we wondered if waiting was safer with Hope.  We now have our answer and can move forward in confidence.  The images from Hope's MRI showed that the clotting issues with the liver are worse than they originally suspected.  They told me this at rounds this morning.  

It's starting to look like the Glenn may not be the life changer we had hoped for.  This may be our life with Hope for a long time.  I can't even allow myself to imagine it, the thought is simply too painful.  I'm overwhelmed today and longing to run out of the hospital and escape this reality.  Hope needs your prayers desperately, and so do we.  Today I wonder where our miracle is, and if it's ever coming.