Here is a video from yesterday for those of you who said you wanted to hear Drew's voice. This was yesterday when all he still couldn't have water yet. He wasn't very happy. It sounds a little bit better today, but still small and quiet. He's been doing a little better this afternoon as far as his spirits go, but still definitely haven't seen a smile out of him.
Drew
Drew is a happy 7-year-old who loves his family, his friends, and everything Star Wars! He was born with a CHD, specifically interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He has had three open-heart surgeries, the most recent was in May 2008 at Stanford. He is so strong and brave and we are very proud of him.
Ava
Ava is a spirited 5-year-old girl. She loves her family, friends and climbing, jumping and dancing. She brings us a lot of joy and a lot of drama! She is heart healthy. We love to see all the adventures she has!
This is how Drew's heart is now!
One and a half ventricle repair 1) VSD closed with a patch 2) Conduit from right ventricle to pulmonary artery . Drew still has the SVC connected to the PA in the upper left. Thank you Dr. Hanley and Dr. Mainwaring!
9 comments:
Glad to hear his little voice no matter if he is a bit grumpy! Hope that you were able to get some rest today! We have been praying for him and that he will feel better and back to himself!!
He may not be happy, but it's nice to see he's fiesty! That fighting spirit will help him in his recovery. That kid is sooooo stinkin' cute - even with all the wires and IV's...
Amy
Thanks for posting the video! I bet you have never enjoyed hearing the word "NO" as much as you are right now!!
His voice sounds good!! So glad the tube is out and the incisions are healing well. I missed you guys at church on Sunday and I look forward to the day when you're back and we'll all be under the same roof together worshiping and praising God for the wonderful things HE has done!!!
Jen Smith
Oh....so sweet. He'll be yelling at everyone soon enough! (don't tell him...but, that made me laugh!)
He's such a cutie pie...
I hope you guys were able to get some naps in today.
Still sending our love and prayers!!
Kathy
Andrea and Dan,
It was so nice to see Drew talking, we look forward to many more of these videos..
Love you
The Bain Family
Very cute video. I hope that Drew continues to feel better and gets back to being himself. I laughed about the snoring Dad, because I know that feeling--except Ted was the snoring Dad!! Hope you get some rest tonight.
Love,
Rebecca Myers
I think his voice sounds good to me! In fact, I heard those same responses in my house today, so he's not even more grumpy than some 3-4 year olds that haven't just been through a major surgery!
Hope you guys are feeling better this afternoon. It is good to hear a little voice.
A couple more things to share:
Many kids are fidgety and have that "can't quite get comfortable" stage after time on the drug drips. This can sometimes go on for days after the drips have stopped. We've had some that don't sleep for days. Don't worry--he'll be back to normal soon. ...and unfortunately there's not much more you can do but to be there for him.
He is still on Toredol --it's a heavy hitter also. He'll only be on that for a couple of days, probably until he can take Tyl. with Codeine. It is extremely doubtful he will remember much even from this stage.
From two whom have been there --Remember you are now in "the Zone". At least that's what we called it: short on sleep, poor quality of sleep that was achieved, eating poorly or questionably, too many visitors, to few visitors, one day starts to blur into the next, is it day or night?, did I already ask (or answer) that question, ...oh and did I mention short on sleep.
Be nice to yourselves, be kind to yourselves. Some times the only (and the best) thing you can do is hold him. Do that if you can and the nurses will help. Even cradle his head in your arm if the tubes are too many. He'll feel like he's being held though it won't do much for you back. He may even push you away after asking to be held. Don't take it personally--he just doesn't know what, if anything will make him feel better at this stage.
When that final chest tube comes out, things will start moving quickly to normalcy.
Then you get to deal with more mudane aspects like:
How do we get all this stuff home?
Will people feel bad if we don't want to talk to anybody for days after we get home?
It's all O.K. and you'll still be in our thoughts and prayers.
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