On Tuesday, The Ear, Nose, and Throat (ENT) team did a scope of Beau's airway (down his nose to his vocal chords) to check things out! They saw a lot of swelling and were unable to get too much information but the doctors started Beau on some steroids to decrease the swelling of his airway. He also spiked a fever of 101 and after a dose of Tylenol it quickly went down.
Over these days, the medical team was constantly watching Beau's levels and how much he was breathing on his own, over the vent settings. Most days he did very minimal work because he is so heavily sedated, he was simply resting which was okay too. He would wake up when they would do an oral cleaning kit.
On Friday, March 21th, we celebrated a special day, near and dear to our hearts now that Beau has blesssed us with his life! March 21st celebrates National Down Syndrome Awareness! This is celebrated on March 21st because of the date 3-21. 3:21 stands for 3 of the 21st chromosome which characterized people with Down syndrome. We got some t-shirts and wore them proudly today too!!
This is the post I made for today so I thought I'd share here too...
Today is World Down syndrome Day! Since July 11, 2013 when we first heard the words Down syndrome from my doctor, our life has ventured down a path we never imagined, a path God paved specifically for us, a path He daily walks ahead of us-leading the way! I reflect today on how God has allowed Beau's story to bring Him glory, time and time again! We welcomed Beau into the world 45 days early on September 15th after an urgent c-section. His little body weighed only 3 pounds 9 ounces. I will never forget my first kiss before he was rushed to the NICU or nurse Leah laying him on my chest for my first Beau snuggles at 23 hours old. Since then we have.... shed tears, sat for a total of 4 months by Beau's hospital crib, did hours of kangaroo care, survived the stress of open heart surgery, rejoiced over poopy diapers, written through 3 journals of daily notes on progress and plans, administered medications, removed and placed NG tubes, learned to use pulse ox machines & feeding pumps, had appointments and more appointments and more appointments, celebrated baby milestones, watched intently during echos and IV sticks, exercised the silence button on his stat monitor, smiled on discharge days and smiled through re-admissions too, held baby hands through isolette windows and gave kisses as much as we could... We spent endless hours in prayer, lifting our son to The Lord knowing Beau was IN HIS HANDS, the Great Physician. Though having a child with a Down Syndrome has brought new challenges, today, I thank God for giving us our son, a BEAUtiful and wonderful reflection of His workmanship.
I am not sure how I found your blog, but I just have to comment: you inspire me. My husband and I welcomed our son, Grant, in November, and he surprised us with his Down Syndrome diagnosis. It has been such a journey of hope and faith ever since, and I can't tell you enough how much you have inspired me to keep smiling. You are SUCH a beautiful mother and person. I continue to pray for Beau. He's a fighter with a bright future, I just know it :).
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