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.