This kid was happy as a clam to move into his new, big boy bed in a larger room this week. You’d never know it by looking at him, but Garrin still has caronavirus, one of the viruses that causes the common cold. Unfortunately, the virus makes it difficult for doctors to know what is responsible for his increased respiratory support needs. What we do know is that his brain ultrasound is normal, his throat is clear of obstructive tissue, and his vocal cords are functioning properly — all good things. Later next week, doctors will run another respiratory virus panel and then decide the best course of treatment for Garrin’s pulmonary hypertension if the virus has cleared. Barring any drastic changes in his condition, he will stay on CPAP-NIV until then. Adding a rate of 40 has helped to keep Garrin’s CO2 levels in the 60s — still too high but acceptable until the virus clears.

Last week, I had the chance to meet several parents, most of which have babies that have gotten or will get a tracheostomy. None of these kiddos have had an easy journey, and many of the parents are visibly exhausted. They hail from across the country, and some have older children states away. They are all doing the very best they can to juggle life’s multitude of responsibilities in addition to having gravely ill infants. Some have stories that are like ours, and others have faced things we’ve only heard of. We are united by our commitment to and unwavering love for our sweet babes, glued to our children’s sides day in and day out, ready to do whatever is necessary to help them overcome that which ails them.

“The only thing you sometimes have control over is perspective. You don’t have control over your situation. But you have a choice about how you view it.” ~Chris Pine


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