It was not an easy, at home, fix. Aaron has a pneumthorax, or air between his chest wall and his lung. You know, outside the lung instead of inside where it belongs. Fortunately for him, it's a small to moderate sized one and he's in the PICU where they are watching closely. Ideally, it will resolve on its own within a few days or so. If it doesn't, or it gets bigger, they'll decompress it.
It seemed like for a little while he might hold his own with help from albuterol. But then his oxygen use shot up again. And again, we ended up having to call an ambulance to get here. He was an angel on the way up, slept pretty much the whole way. But as soon as we got here, the fun began. As we were transferring from the ambulance gurney to the hospital one, he began to struggle more. Sats dropped further, oxygen needs increased. Then we had coughing, lots of coughing, but it was pretty ineffective. Except that after a little bit, he started bringing up blood. And then he popped a fever. And he didn't want an IV, as in, his tiny veins did not want to give up anything at all. So here we were, fever of about 101 or so (38.7 C, I think that's about 101), lots of coughing, some blood, and on ten liters of oxygen (as opposed to our 1-2 liters earlier this week) and still struggling to maintain 90% saturation rate. Yeah, it was a good thing we were already here. He's already had his chopper ride. I told him he doesn't get another.
So we're back again. It will be much harder to update than usual because I don't have the computer with me. Usually I bring it so I can work while I'm here. But I'm still out because of my shoulder and it's needed much more at home for homework and other things. So I'll try to get an update once or twice a day, but I have to leave to go to the parent center to do so.
Please keep our little guy in your prayers. Right now he seems like he's in a lot of pain. It just breaks my heart to see that silent cry.
In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven
Tuesday, April 17, 2012
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Sweetie, I'm so sorry. That is painful. Is there anyone who can give him a blessing up there? Have they said how long a stay this might be?ReplyDelete
There are also computers on the third floor. Get off the elevators and turn to your left and walk a few steps, you'll see them.
You know where I am if you need me, right? xoxo
Hope Aaron is comfortable and breathing a little easier!!! Hope you are hanging in there too! Sending hugs and prayers, CindyReplyDelete
The silent trach cry is the worst :( Sending lots of love!ReplyDelete