The first 48 hours would be critical. They would keep her chest open for a few days to help with drainage and swelling so she would have to stay sedated. It was hard seeing her hooked up to the ventilator and so many medications and to know her chest was open still but I just had to keep telling myself it was temporary. This was also hard because I couldn't hold her like I had been every day thus far. She was a little anemic and so she did need a little blood transfusion. She was recovering very well and they were weening her off of oxygen and some meds that first night and her O2 SATs were holding strong in the upper 80s percent. She was truly my little "warrior" baby.
She was ready to have her chest closed on 2-22-10; just one more step to coming home. I was told it would only take about an hour to do the chest closure so I waited in the waiting area; which was fine but after about 3 hours I had to go to the front desk of PICU and ask IF anything was wrong and why couldn't I see my baby yet? The girl at the front desk of the PICU came back and said Bekah's nurse called about 10-15 minutes ago saying I could go back now and She apologized saying she couldn't FIND me even though I was in the same chair the whole time. So, I was happy that nothing was wrong but I was curious to know why it took longer then the hour. Bekah's nurse informed me that she was starting to wonder what had happened to Me and she called for me OVER an hour ago. I was a little more than upset to say the least.
It was amazing after her chest was closed how quickly she started losing all her tubes and wires and medicines. After 2 days, she just had a central IV line, nasal Oxygen and a NG tube. As far as post-op and her heart she was doing awesome. She was well enough to be moved out of PICU and into a regular room. We were back to square one with her feedings which was the biggest hurdle; so we starting working with OT again.
After rounds on 2-27-10, her cardiologist told the nurses that she shouldn't be on O2 anymore and get the NG tube out and start demand feeding. I was so happy because after asking them to do the exact same thing; they had to do it. You should know No Dr or nurse listened to me -Her Mother. After those tubes were taken out she was eating better; not her full bottle but over half. I was very happy with that.
We would be going HOME Soon!!
Dear Lisa - I'm the mom of two girls with truncus and I just wanted to wish you and your baby girl all the best! We have a carepage at http://www.carepages.com/carepages/TheBlaisFamily and I'd love to email with you.
ReplyDelete- Heidi
Hello Lisa-
ReplyDeleteI have a son with Truncus, and I have a blog with quite a few links to other truncus kids. Both with and without DiGeorge. If you ever want to talk, let me know! :) And when you say CMH, do you mean Kansas City? That's where we've had all of Caden's procedures performed!
And hey to Heidi! I'm on the Truncus Group!
If you want to check out the boys' blog it's:
www.cadenkonecny.blogspot.com
Ashlea--- Yes in K.C. Mo. We live in Haysville, Ks. Just a few miles away from you.
ReplyDeleteHeidi--- I would love to email with you as well.
Wow! I go to Haysville quite a bit! My sitter lives at 55th and Seneca, so literally right down the street. Crazy! Maybe our kids should meet sometime! :) Which surgeon did you have in KC?
ReplyDeleteDr. James O'Brien We live just off of 63rd and Broadway.
ReplyDeleteOh Holy Cow! He did Caden's too! He was awesome. And, I take 63rd to get home everyday! Pass right by you guys! That's just crazy.
ReplyDeleteWhhat s the Truncus Group or Club?
ReplyDelete