Heart Failure

WaitingWe returned to the hospital on Sunday. In short, Maddie’s heart is failing.

After being discharged from the hospital last week, spending Thanksgiving with family, and starting a new regimen of heart medication and diuretics, we hoped that she would improve enough without further intervention. Headaches and poor eating by the end of the week led us to contact her cardiologist. Our hopes were dashed when she said we’d need to take her in to the ICU. Another echocardiogram confirmed the devastating truth that her heart function continues to remain poor. In fact, we can assume now that it will never be as good as it was last spring.

So here we are, on the same Cardiac unit where she spent the first few weeks of recovery after her Fontan Surgery, only this time there are so many unknowns.

It’s been a few days now and though I’ve intended to sit down and share this news with you, I just couldn’t. The reality of the situation has been too hard to face.

Here is what we know right now. The IV medication (Milrinone) she’s been receiving continuously has shown marked improvement in her well-being, overall. She is eating, sleeping, and running around (literally, whenever she can, including riding another tricycle, cords and all) better than she has in a long time. This “cardiac tune-up,” as they fondly call it, is making a difference in her pumping function, just as they hoped, allowing her other mechanisms to relax a bit. But these are only clinical improvements. This medication is not a long term solution. It’s only enough to give her cardiac system a break.

The reality is her heart is just tired. Her special little single ventricle heart was never meant to work this hard. It may have accomplished all that it can do at this point. Her cardiac team is beginning to sense that now. We’ve met with the Heart Failure Specialist doctors already. The reality is that Maddie may be facing a heart transplant in the near future.

There are some Plans A and B that we are clinging to before we truly commit to this Plan C.

Plan A: she continues on this milrinone IV drip for the next 5 days, giving her heart more rest, seeing that she is truly improving , before they begin slowly weaning her off to be replaced with strong heart failure meds she can take at home. A three week stay to assure the plan has worked and then we resume our “normal” lives and live it up until we see a decline again. Hopefully not for awhile. This is what we pray for continually.

Plan B: She responds well to the IV milrinone, but not well enough. We spend a bit more time in the ICU and get trained in how to administer the drug at home. She caries it around continuously in a little pouch and we become more intensively involved in her medical care. She would probably be visiting the hospital more frequently, as well. Life, as we knew it would change.

Plan C: she doesn’t respond well to weaning off milrinone or to the new heart failure medication. We’d then begin the long, painful (emotional and possibly physical) process of heart transplant evaluation with no guarantee that it will be successful at any stage of the process.

Reading the cold, hard facts must be shocking and difficult. I apologize. I needed to write it down. Make it official. It’s the only way that I can prepare myself for what is ahead. It’s only fair to be direct so that you know what we’re facing.

Plus, we need your prayers. Oh, how we need your prayers of healing, but more importantly, of comfort and support. We do not know what will happen.

We started this journey almost 6 years ago with a tiny, fragile baby who had no family. Her prognosis then was foggy at best. Her story was presented to us and we immediately knew in our hearts that she was special, even though our logic told us it was crazy to take a child with such severe problems. We weighed it out in our minds. We fasted and prayed. How could we make this decision?

And then one night I was talking to Julianna, my pseudo-sister.

“How can I take this baby?,” I asked her. “How can I go forward with this when I don’t know what will happen? I don’t know if my heart can heal from that kind of loss. What if she dies? What if she dies right away?”

“Then you just love her. You just love her for as long as you have her,” she said through both of our tears.

And we have. And we will.

There is no doubt in our minds that Maddie was meant to be in our family. That answer to prayer back then continues to be a sweet blessing as we face each challenge. God knew that we’d be here, at this very moment, looking down a very difficult road. He knew we’d be okay then and I feel Him strengthening us each day, reminding us that we will be okay now.

And we will.

23 thoughts on “Heart Failure”

  1. Oh Jeannie – I’m so sorry you guys have to face yet another fork in Maddie’s road. Please know you, Maddie, and your family are still in our thoughts and prayers. Hugs, Jeannie!

  2. I am praying {and voting} for a Christmas miracle.

    I am incredibly grateful you are feeling the enabling and strengthening power of God through this immense trial. His love is pure. His love is matchless. Keep loving that sweet Maddie and keep fighting for her!

    XOXO

    P.S. I am coming soon with that dark chocolate and hug! I love you! Keep holding on, even through the pain, the anguish and the tears!

  3. Oh, Jeannie, I’m so sorry. Medical science, advanced as it is in this day and age, is an amazing and wonderful thing, and even more amazing is the healing hand of our Father in Heaven. I am praying for both to work together for Maddie’s complete recovery. (I believe in Christmas miracles, too!)
    Sending lots of love and hugs.
    Estella

  4. Jeannie, I am so sorry to hear this. I can’t imagine what you’re all going through. You are all in our prayers continuously. xoxo

  5. I’m deeply saddened to read about my sweet Maddie. We have missed her sweet spirit in class. I too will pray for a miracle with an understanding to accept the Lord’s will….whatever that may be. Hang on! You can do this. Please kiss her for me.

  6. Once again, your bravery and strength continue to outweigh the hardships of this situation. Maddie is love and loved and that is a beautiful gift that your family has given her. All that love comes from the heart…where she needs it the most. Sending you lots and lots of love Sprague family!!

  7. I am so sorry to hear this sad news. I just keep thinking that although the situation is heartbreaking (literally and figuratively!), how wonderful the Atonement is. Cling to that and so will we. Praying for Miss Maddie and her wonderful parents. Is there anything that would brighten Maddie’s day if we sent it? And isn’t her birthday soon?

  8. Maddie is very blessed with such great parents! She never would have made it this far without you….and not everyone could do what you are doing, so hang in there and let others know how they can help..

  9. Jeannie,

    We all are praying everyday for Maddie and her speedy recovery. Your family’s strength is an inspiration. No matter what the plan, you all will find peace.

    Love love and infinite love to Maddie and tons of hugs to you ..

  10. I am so sorry Jeannie. The Hsu family loves you guys so much. Though this post brought tears to my eyes, I am glad she is able to be herself for a bit while the medicine is giving her a break. I sincerely hope plan A works. We’ll be praying for you guys.

  11. Praying that the Master Healer will bless her heart and yours with strength in whatever plan God has in mind for Maddie and your family. His plan is perfect. Hang in there!

  12. Jeannie,
    My love and prayers are with you. I’m sorry and saddened by the great struggle that you, Maddie and your family are experiencing. So grateful for the perspective of the Gospel of Jesus Christ. I’m definitely pulling for option A, as well!

  13. You and your family are in our thoughts and prayers daily. I am pulling for option A as well, but if it ends up being option B or C I know it will be a struggle but with little Maddie’s awesome strength and her wonderful family, not to mention the great doctors there, she will prevail.

  14. Each of your children are blessed to have you because, as Julianna knew full well when she spoke those beautiful words to you, you both love each one with every fiber of your soul. Keep loving and hugging each other, keep laughing and crying together. We are loving, hugging, laughing and crying with you. And praying very, very hard.

  15. First thank you for keeping us informed. Your family is amazing, all of you. And I have a special affection for you and having had Maddie in Nursery. You will be in my prayers, names in the LA temple, and in my thoughts and fast for this coming fast Sunday.
    You remind me of “Steel Magnolia” women…at their best and most loving….

  16. Oh my Jeannie. My dear girl. I am all amazment at the brillance of your love. Thank you and Maddie for the lessons. You take my breath away.

  17. We love your family, I know how hard it is to not know if your child will live or die. To be uncertain of the ultimate outcome. I can’t imagine going through this for as long as you have with your strength. Stay strong. Allow yourself to breakdown when you need to. Thank you so much for the updates. We love Maddie.

  18. Dear Jeanne and Colin,
    Our thoughts and prayers are with you and all your family – and many, of course, are going up directly for Maddie. What an amazing lesson she is giving us all – to live every moment to the fullest extent possible! She is such a trouper and such an inspiration, as are you two, with all you are carrying. Please give yourselves big hugs from us & take good care – we know you are there every minute for Maddie and her brothers!
    Love,
    Judi and Chris

Leave a Reply

Your email address will not be published. Required fields are marked *