Thursday, February 21, 2013

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.

9 comments:

  1. This comment has been removed by the author.

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  2. Thank you so much for the update, it seems quite selfish to sit here checking to see if you had time to let us know how she's doing, but not much else has been dominating my thoughts since I heard. Passing the word around for as many prayers as we can get for Eliana and the both of you. Just know that so many people are standing behind you and sending love as best we can.
    Kelly L.

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  3. Dear Dan and Mel, You know I don't say alot and may not always leave a comment but I do want you to know that I am rejoicing with each positive/success that happens and I continue to pray for Ellie and both of you. May God continue to hold you in His arms. He will take care of sweet Ellie. Love Dar

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  4. Bless you all. Sending many healing prayers for your precious girl, and much strength for you both! Thank you for the update! Know that my heart and prayers are with you!

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  5. such a good verse. Still praying love you heaps!

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  6. Dan & Mel, Your journey is surreal to read about, I can't imagine how you are living it. Thank you for sharing the many details. Our family (and Taya's class at school) have joined Eliana's personal army of prayers warriors.

    Rachel

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  7. Prayers are being lifted in North Dakota for you both and your little girl.

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  8. Keeping Eliana and you in my thoughts and prayers. Much love to you.

    Jaime

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  9. Dan, Mel, and Elaina our hearts, thoughts and prayers are with you! The Nault family

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