Help Maci's family while in Boston

With Karissa's permission, I am starting this fundraiser, so while Maci is in Boston, Josh, Karissa, Jake, Maci, and Everly can live as comfortably as possible without having to worry about income.

For those of you who do not know me, I am Lisa Sharp- I met Maci's Grandpa- Randy, Dad-Josh and Uncle-Jason, 10 years ago at a Firefighters Softball tournament. Since the first year, ten years ago, Randy has supported us, and we have been close ever since.
While this fundraiser is not a part of what we do yearly, I wanted to let you know how I know them.

I promise you that if you have ever had the honor of meeting Maci or any of her family, you know that it is absolute love at first sight. They have since become close friends/family and I feel this is just a small way we can help them through this chapter in their story. 

These words come directly from Karissa as I do not want to give any inaccurate information. 

**Today was one of those really hard days on this journey.

We went to the cardiologist. Maci was a total trooper. We got through her echo okay with some distractions. She colored and played matching games on my phone, and then ran the halls like an old pro who's been walking for a while. She waved goodbye, blew kisses to the people leaving, and shook her head yes when they asked if she was trying to escape.

But the cardiologist had a serious talk with me.

I always want to be educated on this journey. I want to know the risks. I want to know what the doctors are expecting. I want to be informed so I know how to best advocate for my daughter. That doesn't mean it's easy to hear what the doctors have to say though.

He was open with me about how worried he is with this upcoming surgery. He talked to me about Maci's life expectancy and the reality that we may not return home from Boston with our baby girl. He talked to me about the complications to expect, and the best and worst-case scenarios. The best case wasn't that good either.

Maci has a leaky tricuspid valve (so--a dysfunctional valve on the only working side of her heart), she has a small left pulmonary artery, and has obstruction in her left pulmonary veins. You don't want one of these with the Fontan circulation, and Maci has all three. These will create high pressures, in a circulation that you need passive flow with. These high pressures will cause complications. In the immediate post operative period, I was told to expect Maci to struggle with fluid and need chest tubes for a prolonged period of time. I was told to expect to be in the CICU for a while--probably months. He suggested I talk with Boston about a plan about what happens if this fontan fails. What if she can't recover? Her Glenn isn't a typical Glenn. After they take it down and create the Fontan circulation, would they be able to reverse the Fontan and go back to where she is now? Would they be willing to evaluate her for transplant? Or is that it? He told me if her Fontan does fail, it's likely that she wouldn't survive to transplant if they would even list her.

He told me that if she does recover okay from this Fontan, we will see complications with it eventually. When I asked how long he thinks she would have before we saw failure, he was blunt and told me that it could just be months. It could be years. We don't know. I asked about keeping her where she's at, because she seems to be thriving. She's growing. She is hitting milestones (in her own time, but hitting them). He said he thinks she's outgrowing this circulation and we need to move forward. Her sats in clinic today didn't go higher than the mid 70s. She needs more pulmonary blood flow, and soon. We need to move forward, even if the next step doesn't look all that promising either.

Boston told us these very similar things when we went there a few months ago. This isn't new, but it still hurts. It hurts so bad. I got a lump in my throat but tried to hold it together as he told me my daughter's odds. I always feel like I need to hold it together when one of her doctors are talking to me. And I did. And then I walked to the elevator and starting feeling the weight of what he told me. My daughter might only have a couple months left to live? Tears starting welling up in my eyes. A lady stepped in to the elevator with me and I tried to stop the emotions. I tried to think of something else. She commented on Maci's cute glasses and how sweet she was. I avoided eye contact and tried to smile at her comments. I could only squeeze out short replies with my shaky voice and she probably thought I was being rude, but I did my best not to release the flood gates on this poor, unsuspecting stranger.

I got to the car and let it go. I called Josh and told him through tears, the hard reality about our daughter's life. We talked about the need to take Jake with us to Boston when Maci has her surgery, in case we never return home with his best friend. Gosh, I can't even imagine Jake having to say goodbye to Maci. It's so unfair that he has to know so much about illness and death in his little life.

So what do you do when you might only have months left with your baby girl?

You go on vacation, and treasure every little, silly thing, have lots of cuddles, try not to sweat the small stuff, and live the best life you can--just as we have been doing.

I am so thankful we've had two years with this little girl that we thought we only had two days with. But no amount of time will ever seem like enough. There will never, ever be a time that I'm okay with saying goodbye to my baby. I want her here forever, darn it. **

We want her here forever, too, Karissa.