I'm happy to say there isn't much to report. Rob has spent the day at the hospital while I got out and picked some final things for the house. He said Charlie has been sleeping very peacefully all day. He will wake up for a few minutes and cry a little and then fall back to sleep. But no "storming"! I hope that by not using all his energy to "storm" he is funneling that energy to heal his brain. He has also been taken off of oxygen today because he is able to keep his levels high enough without it. Rob reviewed the MRI's with the neuroradiologist and he said it was about the same as the first MRI. I wish I was here for that discussion but oh well. We are happy with the way Charlie spent his holiday! We hope yours was as good.
16 comments:
I can't even remember how I came across your blog, but wow, I can't stop looking at it, I'm pulling and praying for you Charlie-and your great family! We spent a week at Primary's this last year with our 1 year old. It's an amazing place, but not one that any of us want to be at. I wanted to comment tonight because I coulnd't help but think he's looking a lot better in this picture than some posted! I hope it is a sign of his body starting to heal! Good Luck tonight!
Sleep tight my "little blue eyes". No one will care if you let you mommy sleep too. GK
what a sweet sweet boy. he looks like your little charles... i'm glad he's been resting, that makes all the people happy. is he ready to wear clothes yet? cuz i can bring him some... will you get to talk to the neurorad tomorrow?
I agree... he looks really great! I'll pray for a restful night for all of you.
Angel, I am glad you got to get out for some fresh air. Any updated picts of the house?
Well what the???? This post is calm, coherent, easy to read, and contains no collegiate propoganda ...OH HI ANGEL!! :-)
Angel he looks soooo calm. It is apparent he is finally getting some good rest! What a fighter eh? Angel our constant prayers are with you. Thank you for letting us be a part of your lives through this. Thanks for keeping us up to date. I know how tiresome it gets and I know how hard it is to have to sit and write bad news... But isnt the good news SO MUCH FUN TO WRITE? :) Get some rest Christensen's! We love you!
angel - what is the crying like?
The crying is like the video only now it is a little louder. It starts small and then he gets louder as he pushes out the cry. It is usually only in one exhale breath. Then a couple grunts and another exhale cry. I haven't seen any tears with it yet so I don't think it is because he is in pain. It is just the vocal whine/cry I think they call it a "neuro cry" because it is high pitched and a way to show they are a little agitated.
Meg- about the clothes. We have some onsies here but when he storms he sweats through everything including his bedding. I never knew he could sweat so much. Also nothing can go over his head because of the drain. So until it is internalized we will just use blankets.
He looks so peaceful and much better than previous pics. We are still praying for you Charlie.
He looks so peaceful, like he's really resting. I hope you guys got some much needed rest as well. God bless you.
Love and Prayers from Missouri
He looks so good- he is starting to look like the before pictures again. Only now he has a few accessories! It is a good day, especially when sleeping is on the schedule!
He looks so peaceful in that picture. That is so nice to see. And it is great to see his bpm numbers down and staying down. Cute little guy. I hope today is good day!
What is the difference between a storm and a seizure? Probably a dumb question.
I keep checking on all of you. I am so happy to hear about what you are calling "baby steps". Each one is huge. Of my daughters 30 years on this earth, we have spent many a month, watching for those baby steps. They all add up eventually. I know you guys are so tired emotionally, it is hard being a parent, but know you have all of us, (A lot of us you don't even know) picking you up. Praying for all of you.
Angel, do be assertive with the physicians. I always said, "Each of you have a job" The resident is there to make sure, Charlie is comfortable, with whatever it takes. So what if it isn't protocal. The Senior Resident is there to make sure the Resident is doing his/her job. The Attending is there to watchover them. But The most IMPORTANT JOB is Yours as Parents to make sure they ALL DO THEIR JOBS. You are such a part of the team, and don't let them think you are not. It really does make a difference. I totally could relate to Rob as I read about teh feeding tube. There is so much I would like to share with all of you and to let you know that there is a happy ending. Know that I pray for all of you each and everyday. Take care. Kim
Hi Charlie, I am very happy that you are getting some great sleep.Hopefully, those docs of yours can figure out what's going on in your brain so you can go home soon. We need a celebration! Praying for you in Montana.
Aww, the sweet little boy...
I sure hope he'll be feeling better real soon.
Hospitals ARE NO FUN... we know.
Post a Comment