Mason Ryder: "Do Not Pass Go"

Okay, okay, I hear you! I apologize for not posting in the last several weeks. Since we returned home on the 15th, we've been struggling to stay away from the hospital. Even as I write this, I'm interrupted to attend to the screaming oxygen alarm. Don't get me wrong, there have been good days, and for those we are so thankful. There have been days when we watch our little boy wandering around the house, happy as can be. There have been days when Mason holds up the dog's bone so desperately wanting to give it to Chief, but can't yet call him, so we help him out. There have been days when Mason's oxygen need comes down, he relaxes, and we all breathe a little bit easier. I can't say this was the best Christmas ever with our 21 month old child. I can't say this was a great New Year's, but boy are we looking forward to a better 2010!

I think our biggest struggle over the last 3 weeks has been getting enough sleep. Mason used to be an excellent sleeper. He would go to bed around 9 pm, fall asleep between 9 and 10 pm, then sleep until 9 am (maybe waking to say hi to me when I gave him his 6 am meds). We were so spoiled and we knew it. Unfortunately, at this point, we aren't so spoiled. Mason has not slept through the night in a very, very long time. We've had nights when we've had a good 3 hour stretch at a time, but those are few and far between, and mostly happen because Bill and I sleep in shifts (he stays up to give the midnight meds and I wake up to give the 6 am meds). Most nights, we awaken many, many times to either a little boy who is crying because he wants his towel re-wet (a wet hand towel or washcloth is like a security blanket laced with crack for Mason - he can't get enough of it!) and/or an alarm going off because Mason's oxygen level has dropped. Either way, we are usually awake for quite some time -- anywhere from 20 mins to 2 hours -- only to go back to bed for a short time to get whatever sleep we can before the next round.

For those of you who know me, you know that I'm a control freak, extraordinaire! The down side of this is that I can't relinquish control enough to have someone else taking care of Mason during these struggles. Even in the hospital, we ask the nurses to not come in in the middle of the night unless they have to. I do have some logic, though -- Bill and I have been doing this long enough now that we know our son. We know what oxygen saturation is "normal" when he wakes and cries and we know what to do to calm and soothe him. We don't have to worry about "trial and error" most of the time - don't get me wrong, we screw up a lot, just don't have to waste as much time trying to figure out what is wrong. So, I know I made my bed, I know I have to lay in it -- I just don't get to sleep in it for long periods of time... :-)

As far as Christmas, it was a struggle for Mason. We really saw a jump in his oxygen need and intolerance for activity that really didn't get much better over the week afterward. Then, as we were driving down to the coast for New Year's Eve and a little getaway, Mason again got worse. Unfortunately, for whatever reason, his oxygen need kept climbing higher and higher. So, we decided it would be best to do the next dose of "high dose" steroids a little earlier than scheduled (just by 5 days, not too bad). As I sit here in Mason's room at the hospital, waiting for the high dose steroids to start, I finally have a chance to finish the blog -- 14 hours after starting it this morning. Amazing how the day gets away from me...

We did get some great pictures of Mason over the last couple of weeks. Here are a few for you to enjoy:

I'm pretty sure I've got this computer thing figured out!