Tonight, no one in ward 4C at the Hospital for Sick Children will sleep, because I am here for an overnight stay with Marshall. I have, as one sleep lab technician called it, one of the worst cases of sleep apnea he has seen. I don’t think this was a compliment, but I’ll take it. For the past year, I’ve had a CPAP machine, and it has changed my life. If I had to choose between Bridget and my CPAP, it would be a close call.
Marshall is staying overnight for a sleep study of his own, and I am here with him. I had too much stuff to bring with me, so I have left my CPAP at home. I miss her already.
We’re here to determine the severity of his probable sleep apnea, a very common thing for children with craniofacial anomalies. In some cases, children need to have their tonsils removed to ease their breathing. If he was older, Marshall might undergo mid-face surgery to increase the size of his respiratory passages. In my nightmare scenario (please, please, please no!), a tracheotomy is performed. I know it happens a lot in children with Apert, and I’m hoping he doesn’t need it.
When we’re done with the sleep study tomorrow, we’ll head right on over for at least two more appointments in the hospital, including an ultrasound on his brain to help determine a timetable for surgery.
From my perspective, Marshall has changed so much for the better over the past few weeks. He’s rolling around constantly, he’s vocalizing, and he seems much more attentive and alert. However, when the doctors see him, so many question marks are still there for them. It’s hard to stay positive when the medical professionals need to look at what’s “wrong” and figure out the best course of action.
That’s all for now. Thank you, again, to everyone who has been reading and following along with Marshall’s progress. Many people have sent us messages of support, and I encourage you to ask us if you have questions about Marshall’s condition. I may not have the answers, but I promise, I can make up something really interesting.