No rest for the weary?

Little Marshy Marsh hooked up for his sleep study tonight.

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.

3 thoughts on “No rest for the weary?

  1. I feel compelled to leave a reply, if only to say I know it’s hard, but trust your observations when you notice positive changes in Marshall. You know your baby better than any specialist.


  2. Hi, It’s Leila (Julie’s friend). I just wanted to let you know that I’ve been reading your blog since you started (since Julie sent me the link). I’ve written and deleted 1/2 a dozen comments because I’m not sure what to say (I’m much better vocalizing, rather than writing). I just want your family to know that you probably have a thousand secret followers who are rooting for all of you, sending you positivity & prayers, and sending little marshy-marsh lots of love. I think you’re really amazing for sharing your story. Two of my most important and influential childhood friends, that I knew since birth (basically they were family), had diseases/disorders (one had Muscular Dystrophy and the other Osteogenesis Imperfecta) and I have to tell you that they were the most positive, funny, enlightening, loving and loved people I knew.

    I just know your Marshall will be the same.


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