On Friday July 3rd at 5 am Cicily had a couple big coughs. Chris and I woke up and Chris ran into Cis' room (I walked). Chris got her out of her bed, and she had already started gasping for breath. She was having another "episode" that we've seen so frequently in the past 2 months, with each one getting more severe. Cicily hadn't had an episode for over 2 weeks, but here it was again, so we began our standard treatment. I held Cicily on her rocking chair while Chris got her albuterol breathing treatment, oxygen, and humidifier. I held all 3 of those tubes to Cis' mouth and sang her songs to calm her while Chris suctioned her mouth and throat with a 14 french catheter.
We and Cis' doctors have theorized that she has these episodes because she's only used to coughing up junk into her throat and then out the trach it comes and with no trach as a trap door, the secretions get stuck in her throat and she gets scared and begins gasping. It's almost as much of a mental panic as it is her airway being plugged up by secretions.
After a bit of the usual treatment, it was clear Cicily was not bouncing back like normal. Chris left the room to call 911. By the time he got the phone and was back in the room, Cis had stopped breathing completely. We put her on the floor and Chris started giving her breaths with the ambu bag. I felt her chest and couldn't feel her heart beating. So after a second of both of us freaking out knowing we had to start CPR, we collected ourselves and I began chest compressions with Chris giving breaths. After about 10-20 compressions I started to feel Cis' little heart start to beat under my hands. So we stopped CPR and by this time the fire department was here. The ambulance came quickly after. They proceeded to intubate Cis and attempted to give her an IV (our carpet still bears the blood stain). Then we were off to the hospital in the ambulance. The nearest hospital to us is a heart hospital for older people. That's where Cis was taken because they had to "stabilize" her before they could transfer her to her normal hospital.
We and Cis' doctors have theorized that she has these episodes because she's only used to coughing up junk into her throat and then out the trach it comes and with no trach as a trap door, the secretions get stuck in her throat and she gets scared and begins gasping. It's almost as much of a mental panic as it is her airway being plugged up by secretions.
After a bit of the usual treatment, it was clear Cicily was not bouncing back like normal. Chris left the room to call 911. By the time he got the phone and was back in the room, Cis had stopped breathing completely. We put her on the floor and Chris started giving her breaths with the ambu bag. I felt her chest and couldn't feel her heart beating. So after a second of both of us freaking out knowing we had to start CPR, we collected ourselves and I began chest compressions with Chris giving breaths. After about 10-20 compressions I started to feel Cis' little heart start to beat under my hands. So we stopped CPR and by this time the fire department was here. The ambulance came quickly after. They proceeded to intubate Cis and attempted to give her an IV (our carpet still bears the blood stain). Then we were off to the hospital in the ambulance. The nearest hospital to us is a heart hospital for older people. That's where Cis was taken because they had to "stabilize" her before they could transfer her to her normal hospital.
Cicily stable in the PICU at her "home hospital"
Chris and I both thought Cicily wasn't going to make it past this episode. When Chris went to ask our neighbor to stay in the house with Maya before we left in the ambulance, Chris told him he thought this was it. At one point before the CPR I put my hand on Chris' arm and said it's ok. I was very calm with the idea that if it was Cicily's time to go then she'd at least be free of her ill-functioning body and she could go chase after some ducks with her great-grandmas. I'm incredibly happy that Cicily did not want to leave us though. She amazes me at how gracefully and joyfully she accepts her calling on this earth.
12 comments:
Oh my goodness. Unbelievable. You amaze me. Seriously.
I am so happy she is going to be okay. I had tears in my eyes as I read this. Losing Elizabeth not so long ago has made me very sensitive towards these things. Also, I remember the sadness and fear I felt as I watched my Dad take his last breath and as my brother listened to his chest to hear is heart stop.
Please give that precious little girl a hug and kiss from us. I hope she continues to be okay. PLEASE keep me posted. I am sorry I don't comment on your blog very often, but I do check it like every other day to see how you are : )
I wish you wouldn't have written this without us knowing she was going to be ok. I guess we just got a little glimse of how you felt. We will be praying for you guys and for her. I really love that girl! Whatever happens in this life, the Spirit really does help us through it. I am sorry that you are having these "episodes" I hope that they don't continue. Love you Janalyn. I am in Idaho, but if you want to cry or vent or talk...you can call my cell anytime.
Not only is Cicily very graceful and joyful but her mom is too. She must have gotten that from you. We love you both.
Cicily did get home from the hospital Tuesday night, FYI.
The sweet smile she gave me Monday night will be permanently etched in my memory. I love each of you so very much. In my mind, all of you are heroes!!
Thanks so much for sharing feelings and info.
Grandpa Norm
Definintly brings back tough memories. I'm so glad she's okay. Aren't you just amazed at how lucky you are to be her mom? I think all the time how lucky I am to have my girls.
Man, Janalyn, even though I knew right away you meant she couldn't breathe when you said episode, I never would have thought it would go into cardiac arrest and you would have to do full blown CPR on her. Of course I realize that is the next thing if you can't get them breathing but I just didn't think about it when you wrote the first quick note. Ugh.
It's got to be a bummer to have the trach back in but such a relief at the same time. I hope that ends these episodes and lets you enjoy some peace again.
Hugs, Robin
She is an Amazing little girl with an Amazing mom and dad to help her through all of this. I'm glad she is doing better.
You guys are soooooo strong, ALL of you. I don't know how you do it. My eyes are filled with tears after reading that. I'm not even sure how to express my feelings...I'm amazed with your family.
All I have to say is holy freakin' crap. What an awful nightmare.
janalyn, i love you and am so sorry this happened! I can't imagine the scare! you sound like angels were there calming you and helping you! you guys were so prepared and saved her little life! I want to hang out with you and hear more about how you and your whole family are doing! So sorry!
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