An hour later, that changed in an instant. They rolled her to her side to change her diaper, and despite the three people that were there, one of which was holding her trach secure, it came out.
Even though they were quick to bag her via her back up airway in her nose, she crashed. Lauren, her nurse, hit the code button, and everyone came running. Oxygen saturations were nothing, blood pressure tanked, gave several doses of Epinephrine and a heart surgeon did chest compressions.
Scariest minutes of our lives.
We watched her sats go down to 15, and then nothing. Erin (a fabulous nurse) called out, "It has been one minute since your last dose of Epi. It has been two minutes since your last dose of Epi."
Jay (the attending, who I really like) did great and called out instructions to the team. ENT came running and she was able to get a new trach in.
It was terrifying and awful and worse than I could ever describe. Watching your child get chest compressions, hearing the instructions, and seeing the faces of those trying to save her life... I just can't.
Erin came over and gave me a hug and I told her she was wonderful for doing what she does. All of them are. For real.
I am so thankful that Tom was here, with me. So, so thankful we could be together through that.
The problem is that her stoma has opened up way too much and is just not healing fast enough. They were trying to avoid more sutures, as it could actually cause more damage. But, as has been the problem, we are constantly forced into having no choice. So, she stitched the area above her trach closed and now we hope and pray that it stays put, and heals well.
They are now saying absolutely NO movement whatsoever, for at least three days. So, they are going to put in a Foley catheter and they are considering a rectal tube. But, the rectal tube has it's risks with bleeding etc. So, they are weighing those issues now.
They have now decided to put the tube in. I pray that goes well and doesn't become a disaster.
She is now "stable" again and the room is calmer.
Of course I just got up to check on her and her heart rate is 150 (even though she is paced at 120), and her blood pressure is up and alarming. They are suctioning her now, and I don't know how I'm going to do this. Everything feels so scary. It all feels so life or death.
And how can I trust the calm moments, when they can transform to chaos in a second? Even "stable" is precarious. Now her nurse looks worried because she is bleeding a lot from her nose.
And Electrophysiology (EP) is coming to check out her pacemaker. Something is weird about her pacing. And she has a fever. They are also going to do an EEG (check her brain waves) to make sure she's not having seizures, or something like that.
I don't want to write anymore right now.
Please pray for her, her caregivers and us. This is so fucking hard. That can't be over stated.
Thank you for your thoughts and prayers. We have such an amazing support group. Just can't thank our loved ones enough.
Much love to you all,
Christy xoxo
11 comments:
Christy, I know your friend, Sally Young. We met while on vacation in Mexica a while ago, and we have since moved back home to the UK from CA. I want you to know that I have followed Harlie's progress (via Sally's posts of your blog), and have thought of her every single day, hoping and praying for you all. I can't imagine what you are going through, but she is remarkable, and so are you. Sending you all the love and hope in the world. Gaynor xxx
In the words of a good friend (and ask Mary Ann because I can relate in some ways), God has a plan for Harlie. We don't know that plan, but he has it and it's his will for her. I worry for you, Tom, Cooper and Murphy as it definitely takes a physical and emotional toll on you. Be strong for Harlie. Friends, family and people who know will be strong for yinz guys.
Be strong,
Steven
Praying for strength for you through these dark and scary times. Praying for light ahead. Praying for Harlie.
I am praying for Harlie. Stay strong.
Sending prayers and positive energy your way, sweet girl
We Heart you and your family
I am praying for healing and strength for Harlie and for all of you. Sending LOTS of positive energies to help you all through this <3.
I am holding all of you tight in my thoughts and prayers for your dear sweet Harlie.
I saw your post through Facebook, and although the circumstances are somewhat different, I've lived this pain. It's the hardest part any parent can play. You're in great hands, and know many are praying for your family.
Can't really imagine what you are going through. After that, I'd just want to hug her and have her tell me that she is ok, but you can't do that.
Hang in there. Good vibes being sent from Cleveland, OH.
Thinking of you all tonight. Sending love.
Thinking of you this evening. I hope things are stable this evening.
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