I guess our string of “boring” days had to come to an end sometime. Garrin has not been impressed with the doctor’s decision to take away the nitric oxide. It is still off, but his oxygen needs increased dramatically today. The doctor said that some kids struggle to go from 5 ppm to 0 ppm, and Garrin is one of them. Because he has been on it for more than a month, they were willing to tolerate higher oxygen levels and desating as Garrin’s lungs adjust. To help his lungs in their continued development, Garrin is starting the second round of the steroid dexamethasone today. The steroid is given in extremely small doses over a ten day period.
Even though we know there will be ups and downs, and this “down” is fairly controlled, the swings still cause this mommy concern. I cried tears of worry for the first time in more than a week today as Garrin returned to needing close to 100% oxygen to maintain appropriate saturation levels. It is so tough to take so many steps backward, knowing he was only needing 58-68% oxygen the previous day. Tomorrow will bring more blood tests and another chest X-ray. While I will always worry (I am his mommy), I am doing my best to offer each new obstacle up to God while rejoicing in the time I have with my beautiful son.
Garrin was tucked in, snug as a bug, when I left for my second night at home in 33 days. Our little man’s test results came back better than expected this morning, even though he is still requiring a high concentration of oxygen. The doctors decided to increase his feedings today and slightly reduce the level of support that he is getting from the ventilator to breathe. I’ll be checking to see how he adapts to these changes several times throughout the night, but so far so good.
I surprised the kids in the pick-up line at school today. Their reactions were priceless. In the short time I’ve been home today, the kids and I made cookies, ate supper, played several hands of Go Fish, and more. My five year old even did the dishes, or at least he tried. No TV and no devices (except for now to post this update), and it was so precious.
I have many more lessons to learn about life, but this experience has already taught me more about myself and the world than I could have imagined. I’ve learned from God, I’ve learned from Garrin, I’ve learned from my husband and my older kids, I’ve learned from those who have gone or are going through a similar experience, I’ve learned from the health care professionals, and I’ve learned from family and friends.
“Everyone is my teacher. Some I seek. Some I subconsciously attract. Often I learn simply by observing others. Some may be completely unaware that I’m learning from them, yet I bow deeply in gratitude.” ~Eric Allen