The first two days with the cast were extremely hard. Drew was incredibly distraught at the fact that he had lost what little freedom he had even with the fixator which allowed him to freely sit up. He took being confined to this cast harder than his previous two casts and there was a moment that I was worried about Drew’s emotional state and ability to last a month being so restricted. But, after two days of moaning, Drew seemed to just accept it for what it is and has since carried on as if the cast wasn’t there. His spirits really picked up after he began to walk in his gait trainer again and he has started doing his own versions of exercise on the couch by rolling onto his belly, doing handstands off a pillow and regularly requests to stand up and walk. I have to admire his positive attitude. That being said, we only have 15 more days with the cast!
But, things are perfect in the Gatten household. Drew is apparently experiencing night terrors during his sleep. Nights here have gone from peaceful to an absolute nightmare. I’m not exaggerating when I say that Drew has a night terror, which cause him to scream, yell and actually say coherent and random bizarre things (such as our favorite, “I just want to blow something up!”), about every 5-10 minutes. Poor Nathan, who has for the longest time been required to sleep next to Drew during the night (I’m sure the Supernanny would object to that, but it’s about the only parenting rule we’ve broken – I hope), is getting little sleep with the constant interruptions. The night terrors used to only occur during the first couple of hours after going to bed and weren’t extreme. But since, they happen throughout the entire night and are blood-curdling.
Desperate for resolution, we consulted with Drew’s Florida pediatrician whose only advice was to not wake him during the episodes and just provide any comfort as possible. I was hoping for some type of over-the-counter sleep medicine that could help him sleep. But, apparently sleep medicine will make him skip the REM sleep which is critical to his sleep pattern and the stage in which the night terrors occur. Though it may seem as if he’s not getting any sleep, his sleep is uninterrupted (the key word here is “HIS” sleep is uninterrupted). From what I read, children don’t remember and are not traumatized by the night terrors so there is no need to worry about any long-lasting effects. I am, however, worried about our own lack of sleep and our sanity on the line (of course, since I’m up throughout the night feeding a newborn it hasn’t bothered me.)
Nathan and I have also grown concerned about the strength in his hands. Drew has been complaining that his “hands are getting tired.” He just doesn’t seem to be able to do things for as long as he used to. Such as eating a cookie. He ate half of a cookie before he asked us to hold it for him. His hands would be too tired to continue to hold the remote control while playing video games so I jerry-rigged a strap on the device to hold it for him. I’m hoping it’s something that can be resolved with hand-strengthening exercises and/or occupational therapy, but I hate to think that surgical intervention may be nearby. I’d like for him to have a break from doctors, hospitals, blood, pain, medicine. But, hands are important, especially with returning to school. I’m afraid it’s not something we can put off (if exercise/OT doesn’t work.)
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I am praying for therapy to make a difference, and no other surgery for awhile. GOD bless our Drew, still praying for a miracle for his heart…all things are possible, to those who believe.