Karin and I take turns staying overnight with Liam when he’s in the hospital. Tonight is my night at home. It’s important that at least one of us try to get some good rest to be fresh and alert in the morning for Doctor’s rounds. Even when Liam is sedated, sleep is hard to come by for whoever else is in the room. Nurses and respiratory therapists in and out all night.
Sleep is pretty scarce around here at the house as well.
It’s too quiet here.
There are usually sounds of life in this house 24 hours a day. Namely, the sounds of Liam’s LTV 900 home ventilator. Most nights I can open the front door to my house and know whether or not Liam is asleep or not without even crossing the threshold. 16 breaths per minute. In and out in a steady rhythm.
Without that sound my home sounds like an empty warehouse. A shell.
So I worry. And I tinker on the computer. And I feel guilty for being here while Liam lies in a hospital bed with his mother making buttons by his side. All while I should be sleeping.
But it’s too quiet here.
Liam is doing better today. He spent almost all of it completely sedated to recover from yesterday’s surgery. Labs are improving and pain is being managed. We’re still having some breakthrough seizure activity but we know why and are trying to head it off at the pass.
I don’t have the energy to give you the play-by-play of it all. It’s been a crazy couple of days.
But as of this moment, all signs point to the fact that he’s getting better, and right now that’s enough for me.
I’d be remiss if I posted tonight without thanking Ken from Blogzilly and Mission: iPossible who after reading my last post sent word to the Special Needs blogging community that Liam needed some positive thoughts sent his way. Throughout the long and stressful day my phone would buzz with emails and comments, sending words of encouragement from other families that really know the life of having children with complex medical needs. Each and every one was appreciated. Thank you Ken.
When the whole ipad stuff went down I will admit that the thought of shutting the blog down crossed my mind. I was unaware of many of the special needs blogs that I’ve found since and the whole mess was my first exposure to this close-knit online special needs community. Getting duped by a the only other special needs blog that I started following soured me on the whole idea of opening myself up with tales of my family. I’m a fairly shy guy after all. The outpouring of support from people who didn’t know us at all but kept us in their thoughts throughout the day has me incredibly happy that I didn’t. Thank you all.