Well, today was a tough day to say the least. So much to report about that I just don't know where to start. And I am way too tired to stay up and write about it all in one post.
So, I'll just start and pick up later, when I can. But first, let me say that Harlie is fine now.
However, about 10 minutes into surgery, Harlie coded and went into cardiac arrest. Maybe that sentence is redundant, but, this is new territory for me. Her blood pressure dropped and dropped and then went to nothing. And they started chest compressions. The cardiac anesthesiologist said that chest compressions are difficult on her physiology (see this post for more info) so he was glad they got her back.
I'll say.
What they are suspecting is that when the surgeon went to debride the wound, it sent toxins/bacteria from the infected area into her blood stream, and into her heart. While a normal, healthy heart could tolerate it, one with her heart complications could not.
They gave her all the drugs you would hear in any medical tv drama (epinephrine and some other ones I can't remember right now). And they got her stable again.
It turns out that part of the bone graft (harvested from her skull) became infected and essentially died. So, he had to remove that portion of the graft. Luckily, it wasn't the entire graft. But, I can't imagine this bodes well for the graft that remains. I'm guessing it won't break any records in good growth. So, that's very unfortunate.
Infectious Disease was called and they are keeping tabs on her. They took bone, blood and tissue cultures to see what bacteria we are dealing with. But until then, she is on two very strong IV antibiotics. Unfortunately, they are so strong that they are very hard on the veins and it looks like she might be getting a PICC line. The good thing is that she can come home with a PICC line, and then our nurses can give her the IV meds and she'll be at home and much happier.
As far as when that will be, we have no idea. I know that they want the cultures to come back so they know they are giving her the right meds to fight that particular bacteria. And cultures take time to grow. So, I'm guessing it will be a couple of days.
The good news is that she is resting "comfortably" in the PICU, with nurses that know her from her previous stay. She is one amazing little girl. Even after a day like today, and a Fentanyl drip (meaning she is sleeping with her eyes closed), she is still swatting at anyone who gets too close. You just gotta love that fighting spirit! And luckily everyone here recognizes that and appreciates it.
Well, I really need to get some sleep now. Wednesday night I couldn't go to sleep so I ended up only getting about 3 hours. And today was a very long, exhausting day. I do have more to tell you, but stay tuned, and I promise I'll give you all the details as I can.
Thank you so much for all your thoughts and prayers.
~Christy
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15 comments:
OMG Christy! She coded?! That is SO scary. I guess the only good is that unlike a TV drama you weren't there watching at the time. I am SO relieved that she is resting (relatively) comfortably now. Big bummer about the graft. I hope that she recovers quickly and you're out of there soon! BIG HUGS!
I am so sorry... you have just had a day that no one should have to have. Poor, sweet Harlie! I hope the meds work quickly and you get home soon!
OMG!!! I cannot tell you how relieved I am that she's going to be okay. I can't believe this happened. I already know how scared you were, having been there myself more than once. I hope you are able to get some rest and Harlie is able to recover quickly. Big, HUGE hugs to both of you!!!
OF course this goes without saying, but I am letting you know that we are all and I mean eeryone I know sending prayers in your direction. It scared the bejesus out of me today when mom called. I hope you know you are always in my prayers. I sure miss you guys alot. All our love from Erie! Kristie dave nate and tayne
I have tears in my eyes after reading this and thinking of what you've had to deal with today. Poor, poor dear Harlie! I thought of you all so many times today and offered up prayers with each thought--almost as if my subconscious knew you needed every one of them. They will continue and I will especially pray the situation continues to go in a positive direction. Hang in there and hugs!!
Oh Christy !! I can not believe how SCARY that all must be !! I can not believe how strong Harlie is and what a fighter she is. We are praying for you all and love you tons. Mike and Marcy
Know that there are a ton of people praying for your family and Harlie. She is a fighter and I love that she is still batting at anyone who comes near her....that is great! :) Hugs And lots of prayers.
Very scary. Thank God for Harlie's strong will. I'm sorry to hear that part of the graft failed. Hang in there. Sending hugs and prayers your way.
Preschool friends are sending hugs and love right now. We can't wait to see her again. We are so sorry she is going through this. We hope she gets to come home soon.
Love,
Miss Katie, Miss Gayle and all her new friends
Christy you just got to be thankful for her fighting spirit...Wow, what a girl!
Hugs.
Thinking of all of you. All our love, Suzanne and Parker
wow Christy i am so sorry that this happened, but forever grateful she is ok now, what a fighter you have there, sending lots of love your way and hope you get home soon..thinking of you all
sorry i am the anonymous number 12, i didnt sign my name, sending lots of love your way Kathy and Kaylie
Harlie's Guardian Angel is with her and will be with her always. It certainly was unfortunate about the graft, but with the PICC linein, the antibiotics will kick in and heal her and soon be home. Our prayers are with all of you. Love from Pittsburgh Layne and Frances Nosich.
Christy,
It broke my heart to read your post. I have been reading your blog since our daughters were born so close together and both have Goldenhar Syndrome. I love reading your posts all the time, but this one was so hard to read. Harlie is in our prayers. She is an amazing little girl who is so, so strong. Best wishes that Harlie gets much better very soon.
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