July 4

Intense is an understatement when it comes to what's been happening over the last few weeks.  Tumultuous is a word I rarely use (nor do I know how to spell it), but think it might be appropriate... I don't even really know where to start to write about what's been going on so here goes.

We've basically gone from nearly deciding to take Ryan off life-support because it was looking like his lungs were not responding to the steroid treatment (which was a last resort).  We spent an entire tear-filled weekend in the city by his side the entire time watching and waiting for some sort of sign that he was responding to treatment - we were devastated.  Out of desperation, we talked to numerous doctors and were encouraged to let the steroids run their course and see what happened.  Low and behold, they started to work, right at the end... He was successfully extubated on June 24, and has remained on the Biphasic machine since.  (Biphasic is a machine that gives puffs of air through his nose rather than the tube that went into his lungs, it's a much gentler form of ventilation - next step is c-pap) We are by no means out of the woods as he still requires the maximum ventilation that this machine can supply, and his oxygen reserves are negligible (he can't be off the machine for more than a couple minutes).  However, he's still showing signs of fighting.

It has been a very hard time for us, constantly debating if we are putting him through too much - how much can these little bodies take - is it fair to him to go through all this stuff - what sort of life will he have after this is all done - how much pain is he really in... the list goes on and on.  All we can do is trust our instincts and our medical team, and know that we are doing everything in our power to keep him comfortable and to ensure that he has the best possible outcome. 

As I said, we are not out of the woods.  After his routine eye exam, they found that he has ROP (retinopathy of prematurity).  This is an eye disease that effects preemies, especially those exposed to high levels of oxygen... He had his follow up check and it was the same, so he'll continue to be on weekly monitoring.  Treatment would involve him having to be re-intubated for 24 hours, which no one is in a hurry to want to do, but if left untreated, it could cause blindness.  Treatment also involves going over to Sick Kids and they do a laser surgery. We're watching his oxygen levels closely, and hoping that it doesn't progress to the stage that will require treatment.  Each day off a ventilator is so much better for his lungs.

What's happening now...  he is stable.  He's needing oxygen and pressures from the biphasic, so we're hoping that eventually his oxygen requirements will go down, and they can wean some of the pressure. Nancy has told us that could take a long time.  Until he tells us one way or another, we'll wait. It's much easier to take him out of his isolette now, so we've been enjoying lots of cuddles.  He's a 'big' guy now, so he's wearing clothes and regulating his own temperature.  Within the next few days, he may even be moved to a crib.  These are all good things that I say with that fear in the back of my mind - anticipating the next downhill ride on this roller coaster.

To end on a positive note - when Scott asked Sadie if she wanted me to say anything to Ryan for her, she said, "I love you Ryan."