Tuesday, November 03, 2009

Day 11

Another morning, and he's still hanging in there. I can't tell you how grateful we are to have so many people thinking about Big Kid and Us.

He had a pretty good day yesterday. His heart rate and blood pressure were all over the place, but they were able to control it. He was on 42% oxygen and maintained a saturation level of about 94% throughout most of the day.

A big problem has been keeping him sedated. Every hour, almost on the hour, he suddenly wakes up from the paralytic and is immediately struggling. Which of course, would make his heart rate and blood pressure shoot up, and messed with his saturation levels so they had to dial the oxygen back up to get him to where he was. Apparently it was pretty bad last night, so they switched him to something else that's working.

Little Guy wrote the kid a beautiful letter. He doesn't fully understand why he's not allowed to go to the hospital, but we're trying. Grandma is going to pick him up today and take him back with her for a few days. They're going to try to keep each other busy so that they don't constantly worry.

I read Big Kid the letter, and his heart rate went up 10 beats as I was reading, and down when I stopped. I hope he was able to hear all the love his brother was sending to him.

Today the docs are going to try to switch him back to the bi-level ventilator. This will be a big step in the right direction.

Please keep your fingers crossed!

34 comments:

ntsc said...

Fingers crossed.

I do look in daily, and you are in my thoughts.

Warner

By the way, if you are on face book, let me know.

Beth said...

I’d say the change in heart rate means he was definitely able to hear that love...have Little Guy write another one!
Fingers are crossed – thoughts and prayers still a constant.

Frau said...

Fingers and toes crossed! And Hugs and prayers too!

Rootietoot said...

Hooray! Progress! I don't cross fingers, but I'll keep praying :) Here's to BK's continued improvement, and some peace of mind (even if it's just a smidge) for you.

debra said...

All digits crossed. Sending love.

Anonymous said...

the reaction to the letter suggests that the Big Kid is hearing you...is it possible to try some music for him, not too loud, maybe on an Ipod or other device so that he does not hear so much of the loud hospital and machine noises....you could try it while you are there to see how it goes, and if it seems to be calming to him (less agitation, heart and respiratory rate steady) then perhaps the nurses could try it when you are not there....
also, you can sing to him, even songs from when he was a baby...it is very very hard to keep tension in your voice when you sing, and no matter how awful you may think your singing voice is, if he heard it as a baby then it is stored in his brain somewhere as a soothing sound and may have the same effect now....tho closing his door before you give it a try might be advised...to reduce any anxiety you have about folks hearing you...keeping you all in my thoughts, and his care providers, too.....

Ashley's Mom said...

I come by several times a day looking for your updates and am so thrilled with the most recent ones. I definitely think there is progress, and believe things will continue to look up.

Hang in there...

Charlie said...

Twenty fingers crossed at our house, Mom.

yorksnbeans said...

They're crossed!

AmyK said...

I agree that Big Kid can hear you and takes comfort in that. I'm sure you bring him peace. That in its self is encouraging I think. He's fighting hard isn't he? Right now, you are my number one internet priority. I check you first every time I sit down. My heart and prayers are with you all.

Willoughby said...

It sounds like he's making some progress. Way to go, Big Kid!

I'll be keeping my fingers crossed along with everyone else!

litzi said...

I hope switching Big Kid back to the bi-level ventilator is successful.

My fingers, toes and eyes are crossed…although it makes typing somewhat arduous!


(((hugs)))

A Tired Wife said...

Goose bumps over the heart rate going up while reading the letter.

Prayers, prayers and more prayers being said.

Joanna Jenkins said...

Fingers, toes and everything else crossed Attila. We're cheering you and Big Kid on. Thank you for the updates.
xoxoxoxoxoxo

Cloudy said...

"big step in the right direction." I am holding on tight to those words. My heart is crossed!

Anonymous said...

It sounds like he is making definite progress in the right direction!

amy said...

I am always thinking about you and Big Kid. We are keeping him, and your family, in our thoughts.

LB @Wait, She Said What? said...

I'm saying extra prayers for the switch to the bi-level ventilator.

He definitely heard the letter from his brother and was reacting to it. Perhaps ask him to write another one and encourage other family members to write one as well. Having him hear how much his family loves him and is pulling for his recovery will give him strength.

I love the music idea that someone else suggested. If he has an ipod or MP3 player maybe you can put it on low and let him hear his favorite songs. It might help keep him calm and not fight the sedation so much. Maybe a favorite book would work the same way too.

You could also just tell him stories from when he was a baby and a little kid. Tell funny ones, sweet ones, or even crazy things he did as a child. Bringing up great memories for him will help keep his mind occupied.

You still have my prayers and I check back every day to see how he's doing.

St Jude said...

I'm sorry I wasn't here for the last update, I've been thinking about you all though. Still tiny steps but he's making progress.

You all hang in there sweetie. xoxo

Green Girl in Wisconsin said...

Oh such good news...progress...that is answered prayer. Still lifting you all up.

Kim Ayres said...

continued ((hugs))

Amy said...

I have only been reading your blog for a few days now, and as I said in the email I sent I love your blog anbd have been sending much support and love and shared some stories. I was wondering what big kids condition is? Is that what is adding to him being so sick??

Amy

Heather said...

I hadn't stopped by for a while, then I did today, and my heart dropped when I saw all the posts and my eyes flew over them, scrambling to scroll down to the beginning 11 days ago.

I'm sobbing now, and Doc came in an just held me and hugged me. I know this sounds pompous but I've read your words for so long, it feels like your kids are somehow part of my own family.

If there was a way to physically channel the hope and prayers and strength I'm trying to will your family's way, your curtains would be blown off the hooks from the force of it.

I'm at a loss for words that don't sound horribly inadequate. Here's the only one I can think of that holds up - I wish I could make it 500 point font...

*LOVE*

Heather

Green-Eyed Momster said...

Sending you hugs and love,
T

Alix said...

Still here. Still praying. Won't quit. I promise!

Stinkypaw said...

Everything I can cross is crossed. *hugs*

Chicago Mom said...

Lots of prayers and crossed fingers coming your way!

Joanne said...

As with other before me - have everything crossed. This was a great report can hardly wait to see more improvment - he is strong - he is strong and so is the love of his family!!

Anonymous said...

I wonder if it is clear what has happened to The Big Guy. Exactly what kind of influenza is he suffering from? Have they told you I wonder. Please have the Little Guy get an immunization shot as well as shots for yourself and hubby. There was an article in the wall street Journal today about how there is a suspicion that immunity (or lack of)to the flu is inherited. (I read it on the train and didnt study it so I cannot tell you more. But please do get the vacine for you all)

Tracie said...

Still lots of prayers coming your way! I think that based on his heart rate, he can hear you and that has to be good for him to know that y'all are there with him everyday. I'll be praying for strength, peace, and healing for him, and strength and peace for all of you!!

Anonymous said...

http://online.wsj.com/article/SB10001424052748703294004574511602782800232.html

Please find out what kind of flu the big guy has a get a vacine for the little guy and yourself and hubby.

Jeanie said...

Still hoping for good news for you each day.

Marla said...

Sending prayers and hugs. I almost lost my daughter last year to flu complications and her cyclical vomiting syndrome. It was such a scary and exhausting time for both of us. I am so sorry. Don't lose hope.

Cat said...

Best wishes to you and yours.