Friday, June 19, 2009


It was decided to extubate Jacob today. He was breathing on his own over the vent. As the tube came out, Jacob had a really hard time breathing. Every breathe he took was very labored, and just didn't seem right. They tried with a Bi-Pap for a few minutes, but as the oxygen level dropped to 37% (should be 95-100%) there was no other way than to put a new breathing tube in.
I can't even start to describe the stress on Jacob's airways and whole body today. You could see that his whole body was in distress after the extubation and second intubation. I felt I was on the TV set of ER during all of this drama.
The reason the extubation didn't work was due to his airways being inflamed from the breathing tube. This is the one thing they can't foresee before removing the tube. He is now on steroids for 48 hours, which should take down the swelling in his airways. The plan is to remove the tube on Monday, if the swelling is down as well as Jacob can breathe on his own again.
Tonight, he is completely out. The steroids are doing their work, and the plan is that Jacob should be still the whole weekend in order to have the swelling go down.
In 90% of patients, the steroids will do the trick. They have not yet brought up what happens with the remainding 10%, if it doesn't work out. I know the last, last resort would be a trache, which we have fought against for 1,5 years now.
It was a rough day, and Jacob took a step back rather than one forward. We're hoping for a really boring, uneventful weekend, so we can hopefully remove the tube on Monday.
Sarah is very happy to have grand pa in town, and so are we! It's a great help, and it also gives us some more options for Sarah and the rest of us each day. THANKS for all the dinners as well - we definitely don't need to starve!
Have a great weekend! - Maria.

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