Get My Girl a Burger
It’s interesting how food played such a stressful and later, a rewarding role in my daughter's battle with heart failure. As she began to slip down the slope into heart failure, her appetite was the biggest sign her body showed us of her illness.
Trying to find anything
She became very skinny and had a difficult time eating and keeping down food. Other moms were limiting their child’s food intake and working hard to plan healthy and nutritious food choices. I was going to McDonald’s and other fast food places that appealed to children trying to find anything that would spark her interest and get her to eat.
Stomach issues were the toughest
What I didn’t realize was her heart failure had become so advanced so quickly that it was now affecting her stomach's ability to function appropriately. The doctors were taken back at how quickly this presented in Alyssa and mentioned several times how she appeared stable yet was moving through the stages of heart failure more rapidly than expected. She was nauseous and vomiting more frequently and as a parent/caregiver, this was the worst side effect of the heart failure to watch. One would think that shortness of breath and trouble getting around would present as the worst issue she was facing, but for Alyssa, it was her stomach issues.
The last thing I wanted
When the time came for us to discuss putting Alyssa on the heart transplant list, she was able to hold very little down and we did everything we could to get nutrients into her. It was so important to keep her as strong as we could but not push her far enough that she was experiencing undo nausea and pain. As she made her way to more acute care, many medicines were working to alleviate her nausea. The last thing I wanted to do was try to make my poor baby eat or drink one more thing.
Smiles all around
By the grace of God and the strength of her donor family, Alyssa received a heart transplant. Everything went smoothly and she instantly began to come back to us. It was shocking how fast the color cane back to her face and the glow and strength was back in her eyes. The day after the surgery we all gathered around her with such gratitude and amazement at the miracle we had witnessed. I never expected her to be up and breathing on her own so quickly.
The time had come for her to eat and her tray was brought in with typical hospital selections. Alyssa looked at the tray and said “ I really don’t want that mommy" my heart dropped as I thought "here we go again!" She then said: “Do you think someone could get me a cheeseburger and frosty from Wendy’s? I can see the sign across the street!" Every single one of us jumped up with the biggest smile on our face, so anxious to get this brave little girl anything in the world she wanted. She got her order and eat her lunch with the biggest smile on her face and we watched her eat every bite with a smile on ours.
What can someone do to better support you? (Choose all that apply)