Finally, when she was 17 months old her condition had worsened to the point that I was terrified to put her to bed at night. I had taken her to the Dr. twice that day and was told it was just croup. That night I took her to the ER. They said she was fine. I refused to leave until they figured out what was wrong. By the next morning, she was in a hospital room and the pediatric heart specialist told us that if she lived, she would need a new heart. Her ejection fraction was at 13%. 

We decided to take her to Vanderbilt

I had no car while there but that was ok. I wasn’t going to leave her anyway.

They discovered her circulatory system was underdeveloped. From head to toe, they tried and couldn’t get an IV anywhere. They tried a pic line in each arm, but that failed. They finally decided to put a central line in her chest.

The Experiment

This line was to check her blood and give her medicine including the experimental drug they wanted to try. Within just a couple of days, this drug started burning her little body from the inside out. She screamed for six hours straight. Her fever was climbing. The last time they took her temp before rushing to find cooling blankets, was 106.8. She was in so much excruciating pain she put herself into a self-induced coma for 3 days.

The only way she wouldn’t scream during those three days was if I held her and stayed perfectly still.

They informed me that she needed several blood transfusions. I didn’t know this was coming. I wanted her to have my blood if at all possible so I asked them to wait on mine. They took it and because of not taking care of myself while there, my blood wasn’t good enough. Nutrition? I didn’t think of that for myself.

So now, not only was she in a very dangerous situation with her heart, her skin was completely red from the chemical burn and I was terrified about what it did to the inside of her body. I was also so concerned about the new blood causing her yet another issue.

As her skin healed, it came off so thick that I had to pull her scalp skin to the end of her hair just to get it off. People thought she was a burn victim.

Here We Go Again

She was finally starting to recover from that when she got MRSA. Back to the ICU again. This time she was there for about a week. She was lifeless for days.

ICU really didn't want you in there, no bathrooms, no food, no chair, no rest.

The first couple of times she was in ICU lasted just a day or two but this time would be longer. Thankfully I had a friend who worked there and found a cart for me to put my things on. She let me keep the cart in her tiny office. Another God send was friends who brought their old 80s conversion van to the parking lot. This gave me a place to keep my things and take a nap. This friend also came to get my dirty clothes weekly, washed them, and brought them back. I had never thought about that need before.

I stood by Daisy’s side for about 20 hours a day. This may have been my last moment with her.

Around 1 am I would cry my way to the van in the parking lot and try to sleep. I didn’t feel safe at all but it was all I had.

Day by day she improved. She got well enough to move to a regular room.

While we were in the hospital, if this wasn’t enough, my other three kids were back at home. School had just gotten out for the summer and my husband still had to work of course.

I truly believe that God put us there in Athens because, without our church family, I don’t know what we would have done. They jumped right in and took care of everything that I couldn’t and I never worried one second that everything was ok at home.

Home Sweet Home

The day came to finally go home to Athens. We would drive back and forth to Nashville weekly, then monthly, then finally yearly.

Because of Daisy’s story, it has been my prayer and dream to one day be a part of something that would soften the hardship, stress, and worry that is magnified when you have no place to rest, put your things, wash your clothes, or get a bite to eat while taking care of your loved one in the hospital.

Daisy's Place in Florence, Alabama is that answered prayer.

You will have a safe, comfortable place to rest, put your things, wash your clothes, and get a bite to eat.

The rest of the story

Daisy is now a beautiful 21-year-old young lady. (Of course, I’m not prejudiced at all. LOL)

Her life has been a very difficult journey, to say the least. As of right now, her heart is doing fine but she has other challenges that we face daily. God has a plan for her.