Day 5: Edmonton

Tuesday, February 19th

Ellie had a really good night. She slept most of the time but her nurse informed us that she was much more alert when she did wake up. There was a lot planned for the day and it sounded like we might not get to see her much during and in between all the scheduled tests. The most significant one scheduled for the day was an MRI . The plan was to do an MRI of her heart and her brain. The feeling was if she was there already why not do both at once. In order to get the best scan possible they planned to administer a mild anesthesia to ensure that she did not move around at all.

After the MRI we were moved to the NICU as there was much more space there than in the PICU. It is the same great care just a different location. The NICU actually feels like a much better fit for Ellie. In particular the beds are smaller so we have better access to her. Today was the first day during this ordeal that we have been able to hold on to one of her appendages for any prolonged period of time... Sure it was just her foot but we were incredibly thankful to have some intimate contact with her.

After the MRI we met our new team of nurses and doctors in the NICU. They are a very supportive and nurturing group. They did their evening rounds with members of the PICU team so that all the information was shared.
The team is starting to feel that Ellie's heart condition is less likely caused by a virus and are now leaning towards it being either genetic or metabolic. The MRI revealed that the chamber of her left ventricle was thinner than it should be. In a best case scenario her condition is physical in nature and can be managed with surgery and a drug regiment. But we are a long way away from any certainty.

The plan for the night was to begin weening her off dobutamine, the major drug she has been on to keep her heart beating at a healthier rate. This will give the doctors a better sense of how her heart is rebounding.

We left pretty late as we wanted to meet the new night nurse.   When home we ordered pizza from a halal pizza place... who knew you could get beef bacon!!!

Later that evening we received a word from a friend that brought our attention to Exodus 14:14.
"The Lord will fight for you, you only need to be still...".

This was going to be our verse of the day tomorrow.