Sunday, July 3, 2011

CCHS testing and our new "normal" - June 30

June 30
Pumping every 3 hours day and night during the last couple of days, I've been able to increase again and I'm stocking the freezer. It’s hard to keep up with though. I'm by no means on a consistent schedule every single day, sometimes I have to delay pumping for 4-5 hours simply because of the drive time involved to and from the hospital. And there are nights that I do sleep through the night even though my alarm is going off on the other side of the room. I guess you can say I manage under the circumstances. I'm trying to find a new normal and get on some sort of a schedule… Wyatt has being doing pretty well over the last 4 days, doing more work on his own. He still has times where he rides the vent but overall he's hitting higher number of breaths per minute a little bit more frequently it seems. We’re hoping it's a sign that things are SLOWLY improving. His art line came out today so we finally got to take his footprints now, yeah! The pulmonologist saw him today and sent out for labs to rule out congenital central hyperventilation syndrome (CCHS) as part of the process of elimination. It doesn’t seem like Wyatt is following the typical pattern of that disease but the pulmonologist wants to make sure. We won't get those labs back for about two weeks though, they're processed in California. I did change Wyatt’s diaper today for the first time and took his temperature. I’m still very nervous to touch him or hold him or do anything with him especially with the vent attached but I/we have to get comfortable with it somehow. My husband gave him a sponge bath last night. It was bittersweet. You could tell he was nervous, too. Quite frankly, it was hard for me to watch because I so long for the normal fun bath time that I had taken for granted with my other three kids. But this is our new normal I guess.

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