This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

July 18, 2007

Monday, April 19, 2010


Today was a big day. The doctors have decreased Michael's sedative/pain medicine and switched his ventilator settings. Now Michael does all the work, and the ventilator only kicks in if he fails to take a breath for 8 seconds. The ventilator and the sedative are tied together in the weaning process, so when one goes down/away, the other will shortly follow.

Michael's oxygen saturation levels were great all day. He "desatted" to 88 once when he was uncomfortable and wanted to be repositioned, but that was it. (FYI, the numbers measure the percentage of oxygen saturation, and a "desat" is hospital speak for "desaturization of oxygen levels in the blood". I've gotten a lot of questions about that one -- sorry.) A "great day" is O2 levels consistently between 95 and 100.

Finally, Michael started food through his G tube today, at 5pm. The rate is 3 mls every 3 hours, but they are still targeting full feeds (60 mls every 3 hours) by the end of the week. (I'm not sure if that is Friday or Sunday -- I keep forgetting to ask.)

Mom had to "plug in" Michael's feeding tube today for dinner. It was a weird experience. It clicks in like the earphones on an IPOD or walkman, but it feels strange to me. It seems like it should hurt when we tug on it or push on it, but the nurses say it doesn't. Michael does get a funny look on his face, but that could be anything.

During the daytime, Michael wanted so much to be awake. He kept fighting sleep and jerking himself awake every time he started to drift off. He also opened his eyes every time Mommy or friend Tammi stopped talking to him or moved our hands away. He was determined not to miss anything! "I know you are going to leave and have a massive party as soon as I fall asleep!" But, by evening, when Daddy was there, he was much more mellow. He also had fewer oral secretions (aka drool) and in general seemed much more comfortable and more willing to snooze.

The funniest (and most heartwarming) Michael story was when the nurse was trying to console him after suctioning his tube and in general "bugging" him. He was getting fussy, kicking, and turning red with frustration. She said, "It's okay. Mommy didn't go anywhere." At which time I came closer and put my hand on his head and spoke to him. Immediately, he stopped kicking and crying and returned to his normal color. I guess he really was looking for me! (But, two minutes later he started up again, so I guess I didn't fix whatever it was he thought I was supposed to fix.)

Well -- that was Wednesday with Michael. It sure feels like we're finally going in the right direction.


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