Of course, when they did rounds they said she was resting TOO comfortably. Go figure. They have weaned her from most of the drugs except the new one they gave her last night (which obviously did the trick). The new drug is also called Precedex, which is a lot easier to spell and pronounce than Dexmedetomidine. Whew. Anyway, she can't leave the ICU until she's off the Precedex and she doesn't have an arterial line anymore. If that arterial line comes out, she could bleed WAY too much, so she needs to have a nurse in the room all the time to make sure that doesn't happen. That was why yesterday was so awful for her nurse. She was very concerned that would happen with all her thrashing about.
They've turned off her pacer for now and she seems to be doing okay. They are leaving it hooked up, just in case, but hopefully she won't need it again. I've asked her cardiologist why we don't just hook up the darn thing for once and for all so we don't have to worry about it anymore, but I can't remember what she said. We had that conversation back in April. I guess I'll be asking her that again soon. Oh, and she can't leave the ICU with the pacer hooked up, either.
The team that rounded said that she drained 120 mls of blood in the past 24 hours (30 mls since 7am today). That's over their 100 mls limit, so I thought for sure they would say they need to stay in. But, they said they were going to take them out. I was happy about that. But, then they said they needed to get the surgeon's blessing and he said no. So, the chest tubes will stay in for at least another 24 hours. I'm not really that disappointed because I would rather be absolutely certain that it's safe. The last thing we need is to have to put them back in later!
Plus, her history of a chylothorax is still in the back of my mind. She had it after her last heart surgery when she was six months old. They said that complication is unusual after the Glenn (the procedure she had at that time). And it showed up three weeks post-op (which is also unusual) and caused her to go into respiratory distress (the chest cavity fills up with chyle making it difficult for the lungs to inflate, which makes it difficult to breathe, of course). We just happened to be on the way to the pediatrician at that time and her doc had to call 911 when we got there. It was very scary. And she ended up in the hospital for eight more weeks waiting for things to heal.
Anyway, while they say a chylothorax is unlikely after this particular surgery (DKS), I'm not completely comforted. And it would be nice if they could start her feedings while she still has the chest tubes in to see if they drain milk. Now the last time it took weeks to show up, so I know it wouldn't be that easy. But still, if she has the "world's worst scarring" maybe it would be different this time around.
She hasn't had anything in her belly since 10:30pm on SUNDAY night. And today is Wednesday! They said that we could start to give her some Pedialyte slowly, then gradually go to her normal feeding schedule. But, it takes forever for them to put in the orders and get things moving.
Oh, and she earned 26 more Beads of Courage from Friday to Tuesday! I will try to take a good picture of them when we get back to the Ronald McDonald House tonight, so you can see them. I love the Beads of Courage and am so glad that they started the program here. One day it will be so great to explain them to her and see how she likes them.
Well, that's it for my update for now. I'll update again tonight. Thank you for all your wonderful messages. I know it must be hard to think of something to say, but just knowing that you're thinking of her, and us, makes all the difference. Sometimes when I get overwhelmed with all of her complexities, I want the world to stop. It is hard to think that everyone else goes on about their daily lives. I know that's silly and juvenile (and impossible, duh!) but that's the way it feels to have this kind of life. I don't feel this way when we're home and she's playing. So, even though you can't stop everything, just knowing that she's in your thoughts makes me feel less alone somehow. So, thank you for that.
8 comments:
So glad she is resting! It is amazing you can say how wonderful she looks when all those tubes look so frightening. We are here; maybe not physically, but definitely in spirit!!
I think you and Harlie are in just about everyone's thoughts. I'm bummed about the fluid keeping her tubes in for another day but you are right, better now than 2 weeks from now. continuing to think about you and hoping for more good news. thank goodness for effective pain meds.
Just wanted to say hello and let you know that you guys are constantly in my thoughts and prayers. Thank you SO much for keeping the blog updated... I know it means a lot to all of us who love Harlie and are thankful to be able to know what is going on with her. Can't wait to get together again when you guys return home!
Christy, I'm so glad that Harlie is resting more easily today. I am also glad that you keep pressing those docs for answers--and even MORE glad that they are actually listening to you!!! Momma knows best :)
FWIW, we did use dexmeditomidine ("dex") when Lucy was addicted to all those drugs and nothing else worked, but--like everything else--it helped a little but didn't really touch her after a while. She just gobbled right through it. So, although it probably would be okay to use it--and wouldn't hurt to try it if nothing else is working--I definitely think you're onto something when you are trying to pull back a little. Listen to your instincts--and to what Harlie is telling you. Your instincts will not fail you!
But IMO, she looks really great! Such a cute hairdo, too :) A girl's gotta look cute, even after heart surgery, lol! Take care--love, Sarah
Kristen and I have been thinking of Harlie and your family constantly over the past few days. I notified MLH so that they could update the group on her progress. Having had a child go through OHS, I cannot even fathom how she got in those positions, post-op Day 1! Kristen wasn't able to do that until at least six weeks Post-Op! She's amazing.
Angela, Mom to Kristen, 15, Sub-Aortic Stenosis, OHSX5, Ross 08-07
Harlie is in our thoughts constantly and we're praying for a speedy recovery. Your strength - and hers - is astounding, and quite an inspiration!
Thanks for all the updates. We are definitely thinking of you often. xoxo
PS - out of the blue yesterday, Olivia asked how Harlie's boo boo on her heart was. She loves that girl.
Very thankful Harlie is finally resting today. I know you are too. Thanks for keeping us updated. Harlie and all of you are definitely in our thoughts and prayers. We hope and pray for a quick recovery so you can all be home soon.
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