Viagra for Hope?

Today we were all reminded of how sinful and sad our world truly is.  I mourn for everyone that was killed or injured in Boston and their families.  What a horrible tragedy.  Moments like these remind me to be thankful for everyone in my life and to live each day to the fullest.

Today I had a meeting with the doctors once again.  The specialists all came together to discuss what should be done with Hope.  When they met on Thursday last week, they met under the assumption that Hope would be taking Milrinone (a heart assistance drug) for a week.  She came close to dying after that meeting and it was clear that she was not tolerating Milrinone at all.  The medication was stopped and Epinephrine (also used for her heart) was started.  She has been on it since then and unable to come off of it.  This is not a medication that she can stay on long term and the meeting today was to discuss what should happen next.

They have decided to put Hope on two new medications tomorrow and to stop the Epinephrine.  Please pray for this transition as there is a chance we could have the same reaction as we did on Thursday and it could be extremely dangerous for Hope.  The first medication is a new heart assistance drug that is similar to Milrinone but not the same.  The second medication, surprisingly, is actually Viagra.  It is used to open up her pulmonary arteries and assist in her breathing.  Hope continues to struggle to breathe and is exhausted at all times.  I am hopeful that these medications will make a positive impact.  We have at least another 7 days minimum in Intensive Care.

This afternoon I stood by as Hope screamed having her blood drawn.  She is completely over being poked and only truly awake when something she doesn't like is being done.  I would say that Hope currently sleeps through 21 of 24 hours a day.  They are looking for reasons to explain this complete exhaustion, but it could simply be her heart failing and the energy it takes to breathe.  It is extremely difficult to witness and I feel myself falling apart slowly and clinging to the truth that God loves her more than I do and is crying over her as well.

Tomorrow Hope will be presented (via teleconference) at the Cardiac conference in the afternoon.  As long as Edmonton sticks to their original opinions, that there is nothing more to be done for Hope, we will move forward with transplantation.  There is a slight chance that they will choose to try one more open heart surgery.  This frightens me as it would be extremely dangerous and potentially life threatening for Hope.  I think I'm more fearful that they'll recommend surgery than listing for transplant.

If they decide not to operate, Hope will be presented at Transplant conference on Wednesday morning. As long as there are no surprises, we hope that she will be listed by the end of this week.  Would you join us in praying?  It feels terrible to pray that someone else would lose a child, so please do not do that.  Please pray that WHEN someone loses a child, and sadly it happens in this sinful world, that the parents would have the strength and love to choose organ donation.  Please also pray that soon a child that has sadly gone, would have a heart that is a perfect match for Hope.

It was explained to me that usually a child is able to take a heart from someone 10% below them in weight or double their own weight.  For Hope that would mean the donor would need to be between 4.5-12 kg.  Sadie is just over 12 kgs which means the donor would likely range in age from 4 months to 2.5 years.  I absolutely ache for families that have or will lose a child.  I have been very close and that pain has been more than I can often bear.  I have a strong burden to be praying for the family who's child will hopefully give new life to Hope with a strong and healthy heart.  I would really appreciate others joining me in this.

Thank you to everyone that has reached out and loved on our family this week.  This is not the first difficult week we've had with Hope, but it has not been easy after being so close to discharge.  The talk of Hope coming home soon has completely gone and we now must gear up for another long and exhausting journey.  We believed for a time that we would finally have a chance to rest, but now have to go back into battle, already weary.  We know that we are not alone in this and truly thank God for sending so many people to walk with us through this.  I simply could not imagine doing this without you all and with out God.  To God be the glory for the great things He has done.