Melody (full Trisomy 18) had a healthy, happy summer playing, eating, swimming, socializing, and charming everyone she came across with her adorable smiles. After her many sicknesses from December to March, she lost a bit of weight. Over the summer, her appetite resumed, and she gained it all back and some!
A few weeks ago Melody was happy, playing, eating, thriving. The next day she woke up with a fever and threw up. Although, we are not quick to take her to the hospital, we got the sense this was odd. She had no other symptoms of a virus, and she had not, to our knowledge, been exposed to anything.
Tests were run in the ER of our local Children’s hospital. Both the viral panel and strep test came back negative. Things were still not adding up, so she ended up getting admitted.
Two days later she was improving.
On Friday, things took a turn for the worse. She got overloaded with fluid. It could have been from the IV quantity, (about 3 times the amount she would normally drink each day), or from the weakened state of her lungs at that moment, or a combination of the two.
We are grateful for the Flight for Life team who transported her safely to the Children’s Hospital in Little Rock.
She had quite the send-off for her grand exit.
Melody took her first helicopter ride (see video at the end of the post).
We are grateful for a couple of young men from our church who flew my husband and our oldest daughter down to Little Rock!
She received excellent care there. She was initially admitted to the step-down unit. We had a sweet time as a family worshipping the Lord around Melody’s fragile little body.
Melody was stable but was sleeping quite a bit and needed high-flow oxygen support. She then went south on that Tuesday morning. The team in the step-down unit decided she needed to be transferred to the ICU. There were some discussions about end-of-life issues and many tears.
That Tuesday was a tough day. Melody kept needing more and more support. Her little body was struggling and needed 20 liters of high-flow oxygen at one point. If she called for more, we would have to move to a bi-pap, and then tougher decisions would have to be made.
After a difficult day, we were relieved and surprised when she stabilized through the night. They were able to turn her high-flow oxygen down early Wednesday morning.
By Thursday, several doctors and a respiratory therapist all listened to her lungs. They all concurred that she sounded amazing. One pulmonologist remarked that she was “impressed”. Another doctor noted that her lungs sounded “normal”.
When Melody sat up and reached out for her sister, we knew she was feeling better. Andrea travels for work and was out of town when Melody first went to the hospital. We were so thankful she was able to come home and be with us as Melody adores Andrea!
When Melody was admitted to the ICU my brother (a doctor) booked a flight to come be with us. He was amazingly helpful! I appreciated his insight in helping us navigate Melody’s stay in the hospital. He flew out to meet his little niece when she was born 10 years ago. This time we thought he would be here to say good-bye to her, but in God’s mercy He was able to be there to celebrate her turn-around with us.
Once she started feeling better she was able to see a physical therapist who helped her sit up and move a little.
We were encouraged that she was on the road to recovery when she started eating again.
Melody recovered much quicker than expected. As she started to feel better and was awake more, she charmed all the doctors and nurses with her sweet smiles, of course.
By Saturday she was on her way home. She ate up a storm on the drive home and has been eating beautifully ever since. Remarkably, she has gained all her weight back!
Discerning what happened to Melody was complex, in part due to an initial false positive UTI test. The doctors in the ICU down in Little Rock came to the conclusion that Melody either aspirated or possibly had a virus that attacked her lungs.
We followed up with a swallow study within a few days after she got out of the hospital. She did not aspirate during the study, and she has not had an issue with aspirating in her 10 years of life. Her doctor thinks that if aspiration was the beginning cause of all this, it was likely an isolated incident.
We are so thankful for literally 1,000’s of people praying for Melody from Canada to New Zealand and all across the United States. We did not have the wherewithal to update many people during that time, but word got out nonetheless. Our church was having a revival that week. They prayed for Melody every night, but apparently they had an especially powerful time of prayer on Tuesday evening with everyone praying individually and corporately. That was when she started to turn a corner. One young lady we have never met set up a prayer chain with about 30 people who signed up to pray for Melody for various time slots. We have friends who prayed individually and friends who gathered their families in prayer many times a day. There were entire churches and Bible studies praying for our little love. We are deeply grateful.
There is an expression that we don’t know what tomorrow may hold, but we know Who holds tomorrow. The Lord was faithful to care for our every need every step of the way. He provided housing through a wonderful couple, transportation, meals, etc. during that time. He gave us counsel, wisdom, and direction during challenging days. He gave us peace amidst our tears. He provided some exceptionally talented doctors and nurses in the ICU. I could literally write a book about all that God did during those 10 days. He is so faithful!
⬇️ Video Below ⬇️
“Hear my cry, O God; Attend to my prayer. From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I. I will abide in Your tabernacle forever; I will trust in the shelter of Your wings. Selah”
Psalms 61:1-2, 4