Up and Down

If this journey starts to feel like a teeter-totter ride with all its ups and downs, I do apologize and honestly can say that I wish it was different!   Ava had that great day on Friday, but then didn’t have as good of a day on Saturday and then when I came in on Sunday she didn’t look great at all.  She was breathing really fast and didn’t have any energy and so I went and found someone to tell me what the Dr had said on rounds as I had missed it.   Well they hadn’t said much about her fluid balance, but when I had our nurse check it for me, Ava was quite positive (retaining fluid).

So I went and found the Fellow (Dr) who was on for the day to ask if we could give her an extra dose of lasix as Ava does not like to be fluid over-loaded .  Unfortunately this Dr didn’t know Ava and hadn’t examined her so she didn’t think that giving Ava extra lasix was in the plan, and was kinda being a pickle about it,  even when I explained that when they had switched things to give her lasix less frequently, it was with the stipulation that if she needed more they would give her an extra dose.

Now I know Ava and I know what she needs so I found myself getting a little frustrated that this Dr wasn’t listening to me, but just at that moment, the staff Dr who I had thought had gone home for the day came up to us while we were talking, asked what was up and when I explained the situation he said right away to give her another dose of lasix!   Phew… it was so nice to be heard.

But Ava still wasn’t great this morning when I saw her, and the team had quite the discussion about her on rounds today.   Ava was still positive – fluid overloaded – but she’s maxed out her lasix dose.   She doesn’t look puffy but it seems that the fluid is there, just not where it should be.   So they did give her a dose of metolazone – another diuretic that works with the lasix to help get rid of some of the fluid, but they were hesitating as they don’t want to dry her out too much.  But since this fluid balance thing just isn’t getting better,  they decided to go up on her IV heart meds – milrinone.   This is kinda scary because there are only 3 doses of  milrinone they ever give… .33, .66 and .99.   So Ava was on .33 and is now on  .66 – her heart is just getting worse all the time and I don’t like the fact that we were only on the smaller dose for a such a short time before having to move up.

So I asked the Dr if Ava was running out of time in her wait for a new heart, but he reassured me that there is always another drug they can give her, which I didn’t really find all that reassuring.    But I guess it’s all a part of buying time until Ava’s heart comes in, so we keep waiting and doing what we gotta do.

But something cool happened tonight.   We are also followed by the PACT team, the advanced care team at Sick Kids, just in case it gets to the point where Ava won’t be able to hold on till her heart arrives.   They are very kind and when they found out that we’ve didn’t have a family picture with Ava,  they arranged for a professional photographer to come to the hospital so we could get some pictures of our family.  What a huge blessing.   Huge.    Isn’t God good?  So we got dressed up as best we could tonight and had some pictures done, it was pretty amazing.

So we can honestly say that even though this journey is a crazy teeter-totter and a very stressful one to boot, no matter what hurdles we face,  God is going before us and meeting our needs like we could never imagine.  It still doesn’t mean it’s fun, or not painful, but at least we know who we can put our trust in and He’s never let us down.

I can’t wait to get the picture back of our sweet little girl!

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5 thoughts on “Up and Down

  1. Dear Lisa,
    That’s wonderful about the family portrait! They’re so precious, all the more with a little one with so many obstacles to overcome. We just never know how long we have, or what journey God has planned for each of us!
    You’re on our hearts and in our prayers,
    Jenn

  2. God is so faithful and so good. How wonderful that a family portrait was arranged for you. I know how much you wanted that and I am so happy for you.

    You are always on my heart, along with Jason, and my beloved grandchildren,
    Love, mom

  3. Continuing to pray Lisa and Jay! Not an easy road at all! You are all learning what it means to be longsuffering. Pick one verse for today to lean on it. Here’s one: “But for me, it is good to be near God; I have made the Lord God my refuge, that I may tell of all your works” Psalm 73:28
    Much love and hugs to you all!

  4. Praying for you and just read this verse this morning. “pray without ceasing” 1Thes 5:17 Our family is praying for a new heart for your sweet girl.

  5. Zephaniah 3:17

    17 The Lord your God is in your midst,
    a mighty one who will save;
    he will rejoice over you with gladness;
    he will quiet you by his love;
    he will exult over you with loud singing.

    Psalm 139:17-18
    “How precious are your thoughts about me, O God. They cannot be numbered! I can’t even count them; they outnumber the grains of sand! And when I wake up, you are still with me!”

    Psalm 56:8
    “You keep track of all my sorrows.[a]
    You have collected all my tears in your bottle.
    You have recorded each one in your book.”

    Psalm 121
    1 I look up to the mountains—
    does my help come from there?
    2 My help comes from the LORD,
    who made heaven and earth!
    3 He will not let you stumble;
    the one who watches over you will not slumber.
    4 Indeed, he who watches over Israel
    never slumbers or sleeps.
    5 The LORD himself watches over you!
    The LORD stands beside you as your protective shade.
    6 The sun will not harm you by day,
    nor the moon at night.
    7 The LORD keeps you from all harm
    and watches over your life.
    8 The LORD keeps watch over you as you come and go,
    both now and forever.

    2 Timothy 1:7
    “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.”

    Jeremiah 29:11
    11 For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope. 12 In those days when you pray, I will listen. 13 If you look for me wholeheartedly, you will find me.14 I will be found by you,” says the LORD.”

    Isaiah 40:28-31
    28 “Have you not known? Have you not heard? The God Who lives forever is the Lord, the One Who made the ends of the earth. He will not become weak or tired. His understanding is too great for us to begin to know. 29 He gives strength to the weak. And He gives power to him who has little strength. 30 Even very young men get tired and become weak and strong young men trip and fall. 31 But they who wait upon the Lord will get new strength. They will rise up with wings like eagles. They will run and not get tired. They will walk and not become weak.”

    Philippians 4:13
    “I can do all things because Christ gives me the strength.”

    Matthew 11:28-30
    28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.” (Matthew 11:28-30)

    Numbers 6:24-26
    24 ‘May the LORD bless you
    and protect you.
    25 May the LORD smile on you
    and be gracious to you.
    26 May the LORD show you his favor
    and give you his peace.’

    No matter what happens on this earth, we have confidence knowing that life here is like the blink of an eye compared to the eternity that we can look forward to as followers of Jesus. May the Lord cradle sweet Ava and each of you as you continue to trust Him through this storm.

    Love,
    Amy

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