Three weeks. Good Lord, three weeks.
Big Kid is down to 40% oxygen on the ventilator and 8 something of Peep---volume pressure.
They weaned him off the sedative and for the first time in 3 weeks, he's awake. Groggy, but there's somebody home.
In the next few days, as he comes out of it, they're going to start trying to determine if there is any major brain damage due to oxygen deprivation.
The nurse took his hand and leaned over him. "Big Kid, you're in the ICU. You've been very sick, but you're getting better. Can you tell me if you're having any pain?" The boy's hand fluttered up near his throat where the trach is.
The nurse went to get some pain meds, so I took his place.
"Hi, Sweetie!" I chattered at him a moment while he kept trying to focus on my face.
"Do you want me to bring you some music?" He made a movement with his head but I couldn't tell if that meant yes or no.
"How about some Britny Spears?" He shook his head with a definite no.
"How about some David Bowie?" He nodded vehemently. Well, at least his taste in music is intact.
He gave me a blinding smile.
Oh my boy, my precious boy.
Then he started sobbing. He's frightened and confused.
Oh my boy, my baby. I'm so sorry.
This morning I'm going to meet with Big Kid's doctors and a representative of another facility they're going to try to move him to in a few days. This facility only deals with long-term ventilator patients who are no longer in need of acute care. His lungs are still bad, especially the left one, and he probably won't be able to breathe on his own for a long time.
Afterwards, THD, Little Guy and I are scheduled to get our flu shots. I guess I didn't realize that I'm in a high risk category, but I am and our doctor is persistent.
Thanks again for all your continued support. It really does mean a lot.
23 comments:
So glad you were able to converse a bit with each other. That, in itself, was a major step forward!
Hang in.
So thrilled to hear about Big Kid's improvement! Yet it certainly must be bittersweet seeing him in pain and confused and overwhelmed with emotion. This is when being his mom and holding his hand and staying close means everything.
The really great news is that his response to your Britney Spears question negates any long term brain damage, that's for sure!
So, you've turned another corner, but you're still not out of the woods. Lots more putting one foot in front of the other, I suspect. Please know you do not walk alone. We are here and our hearts, thoughts, wishes, and prayers continue to be with you, your family, and especially Big Kid.
XO
I am so glad to hear that he wants music!! its a wonderful advancement or you both!! it will calm him and by his music choice, let you know how ges doing :)
lots of prayers and love
pleased to hear he's making progress. my best to you all
I'm crying along with him...it must be SO hard for him to have to go through this. And you, as well. I can't imagine what you're going through.
But at least there's an improvement however slow it may be. :) xoxoxo
I'm sure that the last three weeks feel like an eternity to you. He has been your world and he is so lucky to have you. Great that you got that big smile. Hang in there and get that flu shot,
Big Kid’s difficulty breathing and the damage to his lungs sounds similar to someone with tuberculosis, a contagious bacterial infection that mainly involves the lungs but can spread to other organs. Is the facility where he’s moving to near by so you’ll be able to continue your daily visits?
I’m surprised that your doctor hasn’t insisted that you and Little Guy get a flu shot before now…
Good Luck today. The (((hugs))) continue for all of you, Attila.
Good News! Big Kid is coming off sedation! Hurray! and you and the little guy are getting flu shots. Hurray again! AND BIG KID SMILED AT YOU!!!
Oh I bet he is totally overwhelmed. Poor guy. I cannot imagine what he thinks, how discombobulated he must feel...
My heart just breaks for you guys. I can appreciate how scared BIg Guy must be and how hard it is for you to have spent the last three weeks (!!!!) at the hospital.
But you are seeing progress and if Big Kid can express his dislike for Britney Spears then you KNOW he's getting better.
Thanks a million for your updates, they help make the prayers more specific, but know the prayers are always coming your way.
xoxoxoxoxoxo
It's so good to know he's awake--it's those little steps that are working.
I COULD JUST HUG THE LOT OF YOU!!!
HUGS!!!!
HUGSS!!!!!!!
I'm so glad you were able to speak to him and have clear responses! Your heart must have just melted. I also imagine you wanted to scoop him up and hold him when he sobbed. A mother's joy and pain all wrapped up in a few moments.
Your family getting the flu shots is very important since his immune system isn't going to be 100%. Any protection helps!
I hope he isn't in pain and if he is, that he finds a way to communicate it to the doctors/nurses. I also hope he continues to make improvements.
Continued prayers!
That must of been THE most beautiful smile you've ever seen in your life.
YAY! If he wants David Bowie then there's hope!
Weaning him off the sedation sounds like a positive step. I'm sure it's overwhelming for him to grasp what's going on, though. I'm so glad you were there to reassure him. That smile must have been priceless!
Hang in there, Big Kid! I'll keep sending positive thoughts, prayers and a little David Bowie your way!
I'm so glad that he has great taste in music! I'm glad he gave you a big, blinding smile.
I've been thinking about all of you!
Sending hugs and love for you all....
Great news that he's awake, little steps but good ones *hugs*
The news is better each day. Hang in there.
p.s. Screen the long term care facility very carefully, and then stay vigilant. My experience with a couple of those has not been good.
Ziggy Stardust is the perfect medicine!
You must be so relieved that he is awake.
Tons of love out to you and yours.
XO
Incredible...
from a mom who just could not breathe reading that update
I am so glad that they are going to be weaning him off the sedation. The fact that he is communicating with you is wonderful. We will keep praying!!
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