The Hope 180

I have decided that a 180 is too simple of a term for what Hope does.  She needs to have her own phrase to describe the antics that she pulls on my heart.  I have decided to call it, The Hope 180.  It is not a complete turn around because first you have to pretend you are doing much better, then make a huge turn around and do the opposite.

This morning we got the call from my mom that Hope was not doing well.  Her work of breathing was up, she'd thrown up most of the night and was no longer being fed. Her oxygen levels were poor and her heart rate was high.  The cardiologist came on the phone and told me she did not look good.

When Shawn and I arrived at the hospital we could see that she was not as strong as she had been the day before.  The PICU had already been up to see her and they were talking about whether or not she needed to be taken down there.  Hope was no longer looking like she may be headed home with us, some things are too good to be true.

What happened??  At this point they aren't sure and we're looking for answers.  They have 3 possibilities of what went wrong.
1. Hope aspirated on vomit in the night and has fluid trapped in her lungs as a result.
2. Hope's line is severely infected and has passed into her blood, causing her to be septic.
3. Hope had a rare reaction to the blood transfusion and it should resolve in 24-48 hours.

Hope's X-ray does not look good, but I still don't feel that she aspirated.  It simply doesn't fit with what I've seen her do and how she often responds to vomiting.  I'm willing to admit that I could be wrong.  I feel like the line infection makes the most sense.  The doctors took blood from Hope's neck this morning and sent cultures that should be back in 48 hours.  She was started on two broad spectrum antibiotics as well.  She appeared to improve by the afternoon and I wonder if the antibiotics are already touching the infection.

Our major issue once again, is the PICC line.  We are now in need of access to Hope, again, in order to run the antibiotics.  We may also need to start TPN if she is not able to tolerate her feeds.  There is a question of whether she has feeding intolerance, or was only vomiting because of being sick.  Time will tell I guess.  The PICC line is already leaking and cannot have TPN run through it as it would cause a burn on her skin.  We need a new line and this issue will likely be addressed on Monday.  There is no one on this weekend that would consider touching Hope, it's simply too dangerous at this point.  Hope is already so skinny, I can feel every ridge of her spine as I rub her back and see every rib.  Even a weekend without proper nutrition is not good for such a thin baby.

Please pray for us.  We are so discouraged.  Hope (not the person) is a dangerous thing, it can be the strength that carries you through, but can also be so painful to have it taken away.  There is still a chance that the infection, aspiration or blood reaction will clear and we can get back on track to take Hope home.  It's just a whole lot less likely.  Is this the answer to our prayer and the way to push us to have Hope's surgery?  We are not sure quite yet and will likely have to wait for the cardiologist to comment on that Monday morning.

Today I watched a mother grieve after being told there was nothing more the doctors could do for her son.  We know that we are so close to that place with Hope and I cried seeing her pain and knowing that it could easily be mine.  I want a miracle for them, a miracle for Hope and my family back together again in Calgary.  We need a multitude of angels to storm the ICE here at the Stollery Hospital.  We want to see God move in a powerful way in the lives of these kids and we believe He is able.  Would you please pray that this would happen?  I would love to have a picture of Hope with this little boy in 5 years.  A true testament to the medical community that miracles happen, even when there is nothing they can do.