Going forward…

Well I think my theory is busted… my theory about how perhaps if Ava’s heart-rate stayed low she wouldn’t get a fever.   Last night Ava received morphine every 6 hours, which definitely kept her comfortable and helped her sleep, but this morning her temp came up again.   Oh Ava.   So on rounds today we discussed that since  we have never found any real infection in her blood, and Ava has lost so much blood due to them testing her that she is close to needing another blood transfusion, we are no longer going to chase these fevers.

That means we are going to stop trying to find a blood infection and after this current course of antibiotics is done, she won’t be prescribed any more when she gets high fevers.   Going forward we will keep an eye out for other signs of infection in Ava, like markers in her blood for inflammation, or increased white cell counts…  and if there really is an infection, they will treat it.  But it does seem like Ava’s fevers are more related to her heart function – or heart failure I guess, and no amount of antibiotics is going to help that.  It’s probably harder on her to be getting these strong antibiotics in the long run.  So even though it would be nice to find a definite infection and a source of these fevers, I’m relieved that they won’t have to take more blood from Ava than they already have.

And today Ava was still fluid over-loaded, so once again was feeling awful, and it was hard to see.  I just hate seeing her so uncomfortable and we know that she can’t breath when she is like that so she didn’t come off her CPAP at all today.   They have increased her lasix and she had some great wet diapers today, and even by the end of the day seemed to be feeling alot better.  And that was great because I was able to take the girls with me to the hospital today and Ava actually smiled for Sophia, it was wonderful to see.

And while Ava was napping today – the girls and I checked out the Starlight room at the hospital.   It is on the 9th floor and it’s amazing!  I can’t believe we have never been there before, with all the time we’ve spent at the hospital.    It has an out-door patio and it was so nice to sit there and relax for a few minutes while the girls were playing.   Here is Sophia in the outdoor portion…

Sophiastarlight

And you can see how some of the rocks are painted… so I painted one for Ava. 🙂

Avarock

Jason and the boys came later too and had fun checking out the Starlight room for themselves and before we left today we all gathered around Ava’s crib and prayed for her.

It’s hard seeing our baby struggling so much… I hope there is new heart ready for her soon!!

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2 thoughts on “Going forward…

  1. I love your rock!

    Thinking of you and missing you…. my phone died so I have no way to text or call right now, but I hear the boys are trying to work out a date for us to come see you. Will be so glad, already feels like forever since we had dinner. We continue praying for Ava every day. At Fair Havens there is a little poem in our trailer that reminded me of the faith your family has shown through this last year…

    Things don’t just happen to us who love God
    They’re planned by His own dear hand,
    Then moulded and shaped and timed by His clock;
    Things don’t just happen, they’re planned.

    We who love Jesus are walking by faith,
    Not seeing one step that’s ahead,
    Not doubting one moment what our lot might be,
    But looking to Jesus instead.

    We praise our dear Saviour for loving us so,
    For planning each care of our life,
    Then giving us faith to trust Him for all–
    The blessings, as well as the strife.

    Things don’t just happen to one of His own,
    To one that has taken His stand;
    No matter the lot, the course, or the price,
    Things don’t just happen, they’re planned.
    (by Esther L Fields)

    Love you.

  2. Loved the little picture on the rock you drew Lisa 🙂 Birdie needs a new heart Lord! Please provide in your providence and your care. Hugs to all of you as I’m sure this has been a tough couple of days.

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