Saturday 1 December 2012

The Impossible Balance

Today has not been a great day for Hope.  She is carrying a large amount of fluid on her right lung.  She is working very hard to breathe and has severe in-drawing on her chest with each breath.  Hope's colour is very off and her tummy is pretty swollen.  The overall consensus from the doctors is that she is simply too "wet" or fluid overloaded.  This is a constant battle for us and we appear to lose over and over again.

There are times when Hope's health appears to rapidly decline, and it is all solved by adding more fluid.  On other days, like today, she has a lot of problems that stem from being too wet and needing fluid removed.

This afternoon Hope was taken down to the PICU to have fluid removed from her right lung.  They used a small needle and inserted it between two of her ribs to take it from the lung.  They were able to draw 21 mls out through this process.  Unfortunately, they feel that a great deal of fluid was left behind. After the procedure, Hope was brought back up to the ward.  I was not happy with how Hope looked today and made sure to be heard by each doctor that came to see her.  The STEP team, a transitional team between PICU and the ward, has been involved throughout the day.  It helps to have them as they converse with the ICU doctors about the changes in Hope's care.

At 5 pm I told the nurse that Hope's IV was gone.  They put one in during her procedure in the OR on Thursday and were working hard to spare this 'extra' line.  I have seen Hope lose an IV more times than I can count.  As per usual, they did not believe me and insisted that it was fine.  I finally convinced them to move her pain med, that would burn her skin if the IV failed, out of the IV.  They began running pure saline through the IV and just came to apologize as the line is gone.  I'm thankful that her skin was not burned.  At least we had a second line for a few days, that was a blessing.

Tonight is my first night sleeping on the ward after a 10 day break.  I am thankful for the break, and fearful of how long it will be before this ends.  Tonight as Hope was having an X-ray, Shawn and I talked about life in the hall.  We're tired of living apart, tired of Hope's constant set backs and desperate to live in our home as a family again.  We have so much to praise God for in our lives, but still struggle with our reality.  We are blessed to have so many encouraging, praying and supporting us each day.

11 comments:

  1. And we'll continue, Amy. Your family has become so precious to so many as we witness God working on a daily basis. Keep trusting and pressing on - you are a tremendous testimony as ones who trust God not because your outcome is guaranteed to be a certain way: but because you know His plans for you will always be best. Hugs your way tonight...

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  2. sending you prayers to help you trust in god.

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  3. Keep your strength. You are strong amazing parents. Your daughters are blessed to have you as their champions. You are so amazing even though your feel lost at times. Keep doing what you're doing and draw strength from your faith, your families and you're friends.

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  4. Your family has been through so so much and I am so so sorry. I will be praying for you guys until Hope is better and long after. Keep praising God.

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  5. Praying for all of you...

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  6. Echoing Kendall's thoughts. God will sustain you! Continuing to lift you in our prayers.

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  7. You poor darlings! My heart aches for you all, especially little Hope as she struggles to survive and make it. Praying God heals completely and sustains you all fully during this rough days. You are loved and prayed for. Hugs <3

    Love,

    Liz Gaasenbeek

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  8. I can't imagine how difficult it must be to have no private time to share life with Shawn as his wife. I can't imagine how exhausting it must be to have to keep the staff alert to things that happen with Hope's care that they shouldn't have missed. I can't imagine the effort it takes to make positive posts when sometimes things look so bleak. Holding you up before God and pleading with him to take care of you and Shawn while He is busy working miracles in Hope's body!!

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  9. Dear Amy and Shawn:
    I hear your despair and know that it is so difficult for you both to see precious Hope hurting and struggling so often. My heart aches for you both; I am praying for you.
    "But I will hope continually, and will praise You yet more and more. My mouth shall tell of Your righteousness and Your salvation all the day for I do not know their limits. I will go in the strength of the LORD GOD; I will make mention of Your righteousness, of Yours only." God is watching over you there in Calgary even as He is with me here in Indiana!"

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  10. I am praying for you to have the strength you need each day.

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  11. Just wanted to leave some scripture with you...

    When my heart is overwhelmed, lead me to the rock that is higher than I. (Psalm 61:2)

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