Today has been a little rough for Coop. He has had quite a few storms despite the increase in clonadine. Now he is almost at the maximum dose clonadine so the team has decided to add propranolol (beta blocker). He had one storm that started at noon (after receiving clonadine) and it didn’t stop with any medications including ativan and morphine. Then after he received his next clonadine dose at 4:00 he totally mellowed out. Go figure… Dr. Harlan (the new attending doctor) discussed treatment with rehab and the plan is to go ahead with the shunt surgery on Monday and hold off doing any sort of feeding tube surgery for a while. The thought being that in a week or two we will have a better idea of his gag reflex and hopefully have the storming under better control. If they put a tube in his abdomen now and he continues to arch his back like he does during storms it will not allow the area to heal. Charlie is still pretty sick so the prediction is that we will be here at least a couple more weeks if all goes smoothly. He has also completely wiggled himself out of his left cast again. Janine from physical therapy came by to see our little man and said we should leave it off for a little bit and see if he is less agitated. We may try a splint similar to the wrists that can be removed if necessary. Janine has the magic touch with Charlie as she calms him down everytime she comes. I need lessons.
(Angel)
Subscribe to:
Post Comments (Atom)
14 comments:
FYI: I just googled Thalamic storm to educate myself after reading this post, and to my surprise the fourth google listing is this web site. Pretty amazing.
little stinker. tell him to buck up so we can move him into his new house... call me when you get a chance.
Angel and Rob
I may not know you personally but I am so amazed at your strength, courage, and love. I pray every day multiple times for Charlie. Thank you so much for updating often.
Angel
Do they know why he has days with no storms and other days with so many? Do they expect that the storms will eventually stop all together?? Just wondering. We're still praying hard for Charlie and for you guys.
That's a whole lot of people out there checking up on, thinking of, and praying for little Charlie for him to be #4 on Google!!! Keep at it little man, heal up and rest. <3<3<3
dang it. can i do anything for you? do you need a treat? call me if you get a chance. love and prayers.
We put Charlie's name in the temple last night. Our faith is still hard at work!
We love you!
I'm not sure if you are aware of this....but I've been trying to click on the donate button and it's not responding. (Maybe it's just my computer)
I'm working on the paypal.....give me a few more minutes.....:)
Paypal is up and running!!! I just don't know if I could do it again.....
Sleep well Charlie. God speed Rob. Take care of yourself Angel.
I'm sorry for the continuation of the storms, but I have come to the conclusion that Charlie is here to educate us, teach us to love our fellow man and to seek the Lord in all things. Thank You, Charlie.
You have certainly made me pray more often.
I am sure Rob is thrilled to be gone, when I was married to Ken.. there were times when I wish the RR would go away. But, I learned really quick that if it did our economy and Russia's (oddly enough) would dry up. So, keep up the good work.
Charlie, we really love you and are grateful to you for being the kind of person you are. You are a tremendous example to all of us. Especially us "old farts" who have started to take things for granted.
Thanks, Rob, Angel, CCC and Brit and Cheryl and Kathie and everyone else in the Christensen-Barlow clan.
JIll B
Just wanted to let you know that I love you and think of you constantly. You are a wonderful sister. If there is anything that I can do, let me know and I will do it in a heartbeat. You are such a example of what I want to be with your faith and commitment to Charlie and Brit. Hang in there.
Love,
Stef
I want to add to the great things that Jill said.
This whole experience has made me appreciate the blessings that I have. The blessings of my children, even when they push my buttons. The blessings of knowing that God is real, and He manifests Himself everyday in the small and simple things.
Thank you for your faithfulness that has in turn increased my faithfulness.
But I do have to say that it hurts my heart that I and so many have been touched for good at your expense. Please keep the faith (I know you will), know that there are millions of prayers going out for you constantly, and "when you reach the end of your rope, tie a knot and hang on."
Love and prayers
Post a Comment