In an age when parents stage the escape of a hot air balloon occupied by their boy in the hopes of securing a reality show, I was slightly paranoid of whispers that we may have overstated the Gus-man’s health status – but in my real world anyone who knows me realizes that I much rather prefer to blog about fart innuendo as opposed to one of my children confronting a potentially life threatening medical situation.
The past week has been an emotional roller coaster ride with a track in the shape of a Jackson Pollock painting. On Wednesday night, Shell and I went home with the understanding from Gus’ cardiologists that surgery on his aorta was happening on either Thursday or Friday barring the less than one percent chance that he improved. Considering that children born with Down Syndrome (see sidebar) occur in about 1 out of every 800 live births in the U.S., we should have been cognizant not to rule out small percentages. We also neglected to realize that every relative, friend, acquaintance, and friend of friend who heard about our situation were sending their prayers, positive thoughts, and good vibes towards the hospital room that held our little fighter at Boston Children’s Hospital.
By Thursday, the newest echocardiogram forced the Ivy League educated team of doctors to pause. Gus’ pulmonary pressure was suddenly improving. They decided to wait 24 hours before green lighting surgery. Still, they reminded us, be prepared that they may have to take immediate action if necessary. By that time, our support network had been dialing in favors to saints and others were asking deceased loved ones to pull some strings. The tide was turning.
On Friday night, our cardiologist came back to us smiling and scratching his head. Gus’ latest echo indicated that not only that surgery was no longer an option but they were going to taper his oxygen immediately and discharge the G-man out of intensive care.
On Saturday morning, I got to hold my son for the first time in I don’t know how many days while Greta wreaked havoc on a breast pump and anything else she could get her hands on in Gus’ room. Last I knew, Gus had been off of oxygen for several hours, he was eating, peeing, and pooping - just like many of the babies born on July 23, 2010. We’re hoping to get August Thomas home some time early next week.
I cannot adequately express the gratitude that Shell and I have for every single message or gesture of hope, encouragement, kindness, love, and support that we received these last few tumultuous days. My faith in humanity is restored a hundred times over. While some may have preferred not to publicize these quite personal events, this small blogging project became a therapeutic outlet for me. I had a lot bottled up inside and I needed to get it out. Thank you for reading along and being there with us. At this point, I’m looking forward to making light of the little things in my family’s lives again.
I’m spent. I haven’t felt this range of emotions in a single week in my entire life. I hope never to experience anything like it again. The only emotion I hope to experience now is the sheer joy when I’m pulling into my driveway and lugging my baby boy’s car seat into our home. When that happens, I’ll be happy to tell you all about it followed shortly by the ensuing chaos of raising two beautiful children 17 months apart.