in the
PICU and in the
neuro team. The new
neuro guy came in and said something we've never heard--"I think I know what's wrong with Dexter." Aaron and I were kind of blown away and, I'll admit it, somewhat dubious. He said he needed a 24 hour EEG to confirm it. He told us the name of the syndrome he suspected and sounded quite confident about it. Dexter's all hooked up to the EEG right now (doesn't he look COOL?), so tomorrow we'll see if the EEG confirms Dr. Confidence's suspicions.
The new PICU Doc had a different take on Dexter's ventilator dependence than the last one. He said that the pressure support trials aren't as accurate about predicting extubation success or failure for little babies. If a 5-year-old performed the way Dexter did on the trials, he would be very concerned about the outcome of extubation, but for a guy Dexter's size, those same results are less concerning. He concluded rather noncommittally, "I'm not completely optimistic about extubation, but I'm not completely pessimistic, either." Which makes him somewhat more optimistic than yesterday's attending doctor.
Plus, Dexter had a pretty good day today. He was awake for most of the day without being agitated. He was only having 3-5 seizures per hour instead of 12-15 like he was on Saturday. I got to hold him for several hours, and he gazed in my direction and got all nice and rosy pink as he snuggled in my arms. He looked better than he has in a couple days. It was awesome to see the fulfillment of yesterday's blessing that Dexter's body would be at ease and gain strength and that he would be able to feel his mom and dad's love. I'm trying to just enjoy every day we have with Dexter, whether they be few or many.
3 comments:
We're so glad that you had a better day today. I've been wanting to call & talk to you, but don't want to take away from the time you have with Dexter & your family. Unfortunately with my health I haven't been able to get over and see you as I'd love to do.
Amazingly the things that have been on my mind after many prayers are the same things that have come to you also.
Submitting to the Lord's will isn't always easy, but once that decision is made a peace unlike any other overcomes you.
Over 26 Years ago when our children were little we went through some very hard trials, similar in some ways to what you are going through. Our dear RS Pres told me that through those experiences I was able to gain eternal insight that it takes many a life time to learn. I feel you are learning those same insights, at a young age (probably about the same age I was), and it will bless you in the years to come.
I learned it was so important to enjoy each day to the fullest, each minute of every day. Sit and watch the sunset, the flowers, your children and know that the Lord loves you and is watching over you.
You are constantly in my prayers, especially in the wee hours of the morning when I wake up and have trouble going back to sleep.
Love, Roxane & Randy
Monette, what can I say? I love you! I get so emotional when I read your posts--partly because I feel sad for Dexter and for your family, and for what you are all experiencing. But partly because I am touched by your strength and wisdom. It is so inspiring to hear how you are handling this. You are an example to all of us. I always knew you were amazing...
Monette, I think I was reading about "firmness of mind" in the scriptures the same day you were. That phrase really stuck out to me, too. It had a cross reference to the sons of Helaman who "knew that their mothers knew it," who had "firmness" of mind. I believe you are communicating to Dexter how much you "know it" and he, like the brave and faithful sons of Helaman will also be blessed with a firmness of mind because he knows that you knew. Am I being vague? I just know that your faith, your real live faith, is doing a lot of good-- perhaps even more than you can know just now.
I cried when I saw these pictures. They are overwhelming to me. I love you. You help me remember what is important in life and what real faith is.
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