Day ten. It's early in the morning now and her fever is just breaking. It is such a relief when it breaks. Her hands are cold for some reason. We had a hard time keeping it down tonight. This is hour 5 of +104 fever. Her body is covered in ice packs. I hate it. She hit 106 for about 90 minutes. They are still unsure why she is fevering on day ten of such large doses of antibiotics. No known pathogen to date. Still unsure if that is good news or bad news. Deep down inside, it scares me to death.
The first chest tube failed. I was hopeful after the last x-ray, the pneumonia looked better. I was wrong. Her doctor showed us where her lung was dying. How can I look at her? How can I smile at her while part of her lung is dying? Somehow I do. I need to be positive. They say this is normal. They say it will heal. The second chest tube couldn’t reach the lockulated areas. Stage 3 empyema. Learn about it here: http://emedicine.medscape.com/article/1001747-overview. She went into surgery yesterday at around five. She is out now. The surgeon was happy with his work. No mistakes. He said he didn’t break any of the rules. She is receiving a blood transfusion now. I wonder who it is from. I will never know. I wish they knew Lili. I wish I could send them a picture. I have never given blood. That will change. She is struggling. The pain is back. I thought is was over.
Yesterday was amazing. Lili was back almost all day. How could her body be so sick? She looked so wonderful?
Fear has definitively been replaced by numbness. I think it is the hospital.
I’m having a tough time reconciling my feelings now. I feel less worried, but somehow more uncertain. We’ve loved so much in just three years. She will be OK. The risks associated with every decision make me sick to my stomach. Will she be OK?
Jen is my strength. I can’t believe how brave she is. She always knows what to do. She is always calm. She holds my hand and squeezes when she can tell I am about to cry again. I hope my guy friends don’t read this. Do they understand? She’ll be OK. The fevers will stop. Her lungs will stop draining. Her lung will reorganize. They say she’ll never know in a year from now. My fingers are crossed. I spend all day trying to be positive, I think I sound extra negative when I am alone at night.
Her fever is coming down.
I shouldn’t write at this hour. Never eat alone, right? I can’t think of what else to do. I can’t sleep. I hope she knows how much I love her.
She’ll be OK.
16 comments:
No words....Thanks for the update...Still praying....Stay positive
I love that you posted this! Real tear jerker.
I am so sorry your sweet family is going through this right now. It's just not right. But she'll get better and things will get back to normal. Know that we are thinking and praying for you. Keep the updates coming (if you can) Take care!
We pray for Lili every waking hour. I stare at my phone for updates, so i appreciate the texts from mom. I can't imagine what you and Jen are going through, but I pray for you too. I know Lili will be okay, but the process to get there sounds horrible. I am so happy she had a good day yesterday to lift spirits a bit.
I love Lili so much and can't wait to hold her hand and do the bootie shake again soon. :-)
Kylan, thank you for writing. We love you.
I keep checking your blog for updates. Thanks for posting this. It is hard to read, but there is strength there. YOU are strong too you know. Lili is so lucky to have you. We love you.
Jen I had no idea this was going on. I haven't checked blogs for a while. I am so so sorry that Lili is so sick, that is just heatbreaking and terrifying. Know that she and your family will be in our prayers. If you need anything, please please don't hesitate to call or ask. I'm serious, ok?
Lili is in our prayers, please let us know if you need anything at all. Dawson can't wait to play with sweet Lili again.
Kylan all of us who have kids understand. Our heart goes out to you. Let us know if there is anything we can do. If you need dinner, a baby sitter for Serelle, anything at all, just let us know.
Dave
Oh I'm so sorry you guys are going through this. I've talked with Julianne and your mom, and Julianne's been texting me and emailing me updates. I hope Lili gets better soon. She's so cute, and so strong. I'll be thinking and praying for your family.
Thinking of you four always.
What a gift you have! Reading your words makes me feel like I am right there in the room with you guys.
You and Jen are such amazing parents! We love you guys so much and pray that little Lili will recover soon.
Kylan - thank you so much for the update. You are all in our prayers.
Love you.
♥ you all.
praying for you all.
thanks for the update kylan.
Grandma called to tell me what is going on. We are praying for all of you. I wish there was more we could do. We love you guys!
As I sit and watch you take care of Lili through all this I am struck by what remarkable parents you are. It is day 13 and you are exhausted and yet as loving, patient, and encouraging with Lili as you were on day 1. She finds such comfort and strength and courage in your presence. I am struck by your love for this little girl, no child has ever been loved more and she feels that love as she fights this battle. She will be OK. She will run and giggle and boss us around again. She will be dancing and playing dress up in no time at all. She will be OK.
i am drawn back to your blog again and again. just read elise's comment and i am reminded again at what an a w e s o m e family you have. not awesome in an 80s cover band sort of way, but in an inspiring, simple - family is the cornerstone of our lives sort of way.
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