10/26/17 - Esther in ER & Peter Update

The last day has been absolutely crazy. Short story: Peter wasn’t able to sleep because he would stop breathing. Esther was admitted to Riley Children’s Hospital for severe croup.

Long story:
Peter has been in constant pain. We have found a concoction that keeps it under control enough but there isn’t much more that can be done expect wait for the first 48 hours post surgery to pass. The muscle spasms should lessen by then.

Sleep apnea has become a serious problem. It got to the point that we had to force him to talk a few words every few minutes or he would fall asleep and stop breathing. The memo was missed he needed absolutely no oxygen through his mask, and so he had some for a few hours yesterday in an attempt to let him sleep (he did a few 8-10 minute spells but pain or apnea woke him every time.). An amazing resident **correction: Doctor, not resident** came in and caught this serious error—if you have had Bleomycin you cannot have oxygen (except in extreme situations) because it can cause lung scarring when they interact, and can be fatal.

This led to a very hands on 7+ hours. Peter would stop breathing if he relaxed for more than a minute (He’s gone about 40 hours without good sleep.). We had to ask questions and keep him awake. It was so hard.

Finally a doctor had a new idea: let’s try a cpap machine. Peter was able to sleep for the first time without his oxygen and respiratory rates going down too low!!!!

I went home to sleep at 2 AM, and at 3:45 am I awoke to a pounding on the door. After a few minutes of sleepily convincing myself it wasn’t really for me, I came to my senses enough and found my dad at my door (they came to Indiana earlier to visit us), who said, “Esther is in the ER with croup and they need you to come.” I groggily get dressed and walk outside to find we have a police car to take us to the hospital. (Hello, my-life-is-a-medical-drama-comedy-tv-show.)

She is a more severe case but she is progressing wonderfully with steroids and medication. We are currently waiting to be admitted so they can keep an eye on her and we may stay one night.

Personally I’m exhausted. I don’t do well emotionally with lack of sleep, and I am solidly in a deficit right now. The hope is once she is settled in her room, my mom and dad will take shifts with her so I can sleep and hopefully see Peter today. Tami has been with him since late last night.

I’m really angry that my family’s ability to breathe has been under attack. Thank you to everyone who is standing with us. We will not be suffocated, we will not be silenced. We will continue to declare the foundational truth of our lives: We trust Jesus. No matter what, we trust Jesus.