Wednesday, February 6, 2008
Rough Afternoon :-(
We're not really having a ton of fun in the PICU today. Charlie was doing ok to start out the day and even let Angel and Grandma Cheryl hold for a while until he whipped himself into one of his fits. These are the fits that they are referring to as a "Thalamic Storm" are his little noodle unable to control the firing of neurons that originate in his thalamus. The firing is due to pain, fever, agitation, stimulation or being a stubborn Scandinavian and once the firing starts he isn't able to control it and it starts a chain reaction that we've only been able to control w/ meds. His last one lasted over an hour and a half and it isn't very fun to watch. Right now he's had tylenol, motrin, clonadine, methadone, 2 doses of ativan and morphine. So it goes w/o saying that he's pretty snowed. We hope it lasts for awhile. We are still very concerned that his neurological symptoms aren't improving so we are praying for his thalamus to chill out and give my little fighter a break. How long can my little buddies ticker hang out at 220 bpm?
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10 comments:
Bugger, well I think that's just not acceptable and just crappy. I'm so sorry that you have to watch his little angel struggle through these storms. I'm still praying for you all and just keep thinking of the words of Pres Hinckley in his tribute, "...we know that much good has come of these dreadful circumstances..." There are hundreds and thousands of people united together pulling for Charlie to fight this one clear through to the end. I love you all and am holding out for a miracle on this one!
I'm so sorry that Charlie had a rough afternoon. I was so excited for this morning's news now hearing this I'm so sad again! We will all be praying for his thalmus to get better! Keep hanging in there and we love you guys so much! Keep fighting Charlie sorry you have been working so hard!
Wow! sorry to hear this last report. I was so encouraged when I saw him last nite. I guess it one step forward and two steps backwards.... but there will be progress... however, slowly.
We are still praying for his recovery and that he will be able to go home with you..
Love you , JIll
PS... has anyone heard from Marilee. I called her this morning to see if she had been impacted by the tornadoes. Joey wasn't so I checked him off my list, now I need to check the Christians.
PSS.... Bryan comes home tonite!
Love JIll B
We are praying for angels to watch over and care for all of you! Thank you for sharing your story with all of us. I admire the strength and love of your family. I check the blog many times a day and each time I say a little prayer for all of you! I oray for all of you to feel peace and know that Heavenly Father is sending angel to help you!
All of your railroad buddies wish you and your family the very best. We all want you to know that you all are in our thoughts and prayers. If Charlie is anywhere near as headstrong as his old man, he is going to be just fine!
We were sorry to hear about the long rough day, all part of that roller coaster ride. We want you to know, your new neighbors and friends in WB are all pulling for you. As part of that, the ward here wants to feed the next work party, big small whatever. We weren't sure who to talk to, so who ever is lining up the work meals please contact Jen before Friday at 292.5042 or after that the RS Pres at 295.6752.
We just had the ward pinewood derby and trust me when we say let them serve you by feeding the work group, it is a good thing, we will leave the construction to some of the more experienced!! We had wheels flying and everything!! Just know your new neighbors are all concerned for your well being and are continually praying for you guys. Hang in there we love you guys!!
Well (insert foul language here).
I was hoping that by the time we got our internet connection righted I could come here for better news.
I have now been staring at the cursor for 20 minutes trying to think of something that might comfort you, but really, nothing but the return of the health of your child can do that..hang on.
PS. We were surrounded by tornadoes last night but are unscathed except for occasional power and internet outages.
well it only makes it clear we all are on the life roller coaster we all have are ups and downs and this certainly is a steep hill down.
wow aub. pretty insightful for a young gal. tell coop meggie says to keep up the fight. maybe since he's resting right now he'll listen...love you guys.
glad your ok marilee - we were worried about you.
Ditto Trish on the miracle and strong work on Hinckley quote. Ditto Jill and Meg on Marilee's safety in the south. My prayer list is currently too long for anyone I know to be losing a roof. Ditto Boomer on praying for the thalamus and Aub on the steep hill. This family is so stinking smart....I don't need to have an independent thought.
Super Cooper......I am patiently awaiting some gagging and perhaps a strong cough or two! You have sure reminded us all about the million things we take for granted.
Rob and Angel......My neighbor (not Liz Bodkin) is a sign language PROFESSIONAL and she has offered to teach us all sign language if the little man needs us to learn it. She is a University of Utah fan, but Rob will see that as her only fault once he meets her. Thanks for humoring all your adoring fans with the blog updates. If I had a dollar for each time my kids ask how Cooper is and I could pay off my car.
XOXO
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